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LH, we here mostly subscribe to the idea that we each can only change our own behaviors, not the behavior of others. By making a small change in your own behavior, this house of cards will at least shift.

No, you don't feel good. Saying "no" to someone we love rarely does. But sometimes it must be done. You've taken the first step toward a more honest relationship.

MIL probably has some level of cognitive decline. She may not agree to any changes. The thing is, of course, can your wife see her way clear to say "no more" or something like that to her mom?. As adults, we don't always need to accede to the demands of our parents.
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LossingHope Apr 2020
BB, thanks.
I have compared it in my mind to correcting a child. They often guilt you into feeling bad, but when you're right, your right. It does them no good to coddle and appease.
I just want to say again, typing out my thoughts and receiving valuable information from folks living with, or having past experience in these situations has been liberating. I'm still sad, but hope is in sight.
Thank you all so very much.
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Good for you, LH.

The bit I'm cheering loudest about is that you told her what you DO want her to do, and it's achievable, and it's right.

You're being constructive. She may take a little while to grasp the point, but you stick to it, tightly. Well done you!
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LossingHope Apr 2020
I also sent an email to our local VNA. They are already involved as far as visits, baths, and regulating medications. I explained the situation and asked if they would send a social worker in to begin the conversation. I debated doing so, because it could create hard feelings between us. I hope that this is one of those times that we can look back on, and she'll see my reasons, and understand that I was acting in her interest, not my own selfishness. I'll update you all when/if this progresses.

You are all awesome !!! Thanks for the support from everyone. It's like having invisible friends that care.
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Lossinghope, you say your wife has never worked outside the home and has always taken on the caretaking roll. She took care of the kids, and now taking care of her parents. Nothing is going to change unless she wants it to change. You can’t make her change. I suggest a marriage counselor. This marriage is working fine for her, but not for you. She sees nothing wrong with living with her parents. If I was living with my parents, my husband would tell me to STAY there. If my husband was living with his parents, I would tell him to STAY there. You can’t change another person, you can only change YOU.
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LossingHope Apr 2020
Understandable. That's basically what I told her today. I added that I really miss her in my world, but... It's her choice.
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LH- Wow! I just read that you told your wife that you reached the end of your ability to help and that she needed to talk to her mother about getting the professional to come and assist. Bravo!

I'm curious though, about your wife's response to what you told her. I really hope she will eventually see that what she's doing is unsustainable, and detrimental to her marriage, and will take steps to rectify the situation both for her parents and for you & her.

So glad you found this forum. I stumbled on this site couple of years ago when I was under so much stress taking care of my Alz. mother. The people here are amazing.

Your wife could really really benefit from joining this forum. Many people here have been there, done that, and know the ropes and are willing to help others.
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LossingHope Apr 2020
Polarbear, Thanks.
Her response was that I, and our dog could move over there. I declined without laughing.
We have a home that I bought, a yard that needs mowed, and a dog that loves his sleeping spot. It is the home that her and I spent our lives in together. I'm not the one that chose to abandon that world for the good of her parents lives.
At this point I've been given a list of things she needs for her new living arrangement, which I will reluctantly provide.
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LH to me it's really simple. I'm looking at this from your vulnerable FIL's point of view, and the lack of professional insight and input simply means he isn't getting the care he really needs.
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Beatty Apr 2020
Spot on.

In regards to the MIL making decisions to deny Hospice for FIL - You may like this quote I came across;

"Honoring the wishes of a person with capacity demonstrates respect for the individual. Honoring the wishes of a person without capacity is a form of abandonment. The distinction, insofar as it can be reliably made, is critical".
–Linda Farber-Post, clinical ethicist and educator
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"I also sent an email to our local VNA. They are already involved as far as visits, baths, and regulating medications. I explained the situation and asked if they would send a social worker in to begin the conversation. I debated doing so, because it could create hard feelings between us. "

LH, I think you and your wife are beyond "maybe creating hard feelings". You are trying to save your wife's life (and get your FIL some peace at his end of life).

Not sure how this is going to play out, but you ARE doing the right thing.

This is NOT about getting the siblings to step up. They (and you) only have control over their own actions and they have voted with their feet. They clearly see that their parents need more help than a bunch of adult children can provide.

They may be your best allies here, but only in the sense that they may have some insight into how to approach your wife. Also, your adult children may be good communicators with their mom.
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LH you have taken the first step - refusing to be 'on call' today. It may feel like *withholding* support right this minute but in the BIGGER picture it is to *add* more care.

When an unstable house of cards falls, you can re-build a STRONGER one.
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Is it possible for your wife to leave her parents for a 'date night' evening with you?

Cook something nice to eat in YOUR house (or get favorite delivery). If she suggests bring to her there, sorry the offer is just for us two.

Don't bring up 'the olds'. Smell nice, be a normal couple eating dinner, connect.

She may only be able to talk about them... it is her current walking breathing life. Just listen (or have a glass of wine & your listen face on - tip courtesy of my DH).

At some point the anger of losing HER life as it was & living her parent's life instead may hit her. The anger may be directed at you but if you are right beside her you can dodge it & redirect it (people just shouldn't get old!)

If she breaks down & has a cry - your shoulder will be waiting.

Just an idea. I've had a long day at work & I'm so thankful my DH has offered to cook tonight.
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LossingHope Apr 2020
Once again, it is impossible to be alone with my wife, for shoulder crying or nice smells, or dinner. I do get a fair share of phone crying though because she'll wait until they are in bed to call me and vent.
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Mother/daughter bond... hello... do not ignore that... doctor should be asked if mom or pop are candidates for palliative care of hospice. Hospice is a bigger pill to swallow since it = death.... not really the case.. Yes, they evaluate you every 30 - 60 days to see if you still "qualify"... My LO graduated 4 times out of Hospice. Last one, she went Heaven.. So, it is NOT AN IMMEDIATE DEATH SENTENCE. ,
Reading a magazine i bought last year.. This woman got amnesia... her ceiling fan fell on top of her head.. Seriously? a ceiling fan clocked her correctly.. She cannot remember anything. The REHAB taught her how to make a tunafish sandwich.. Why? It takes everyday skills that we take for granite.. An amazing story about life, love, family... she didn't know her husband or her children... over a ceiling fan dropping on her... And we think we are in control of most everything that happens, until... one loose screw gets loose and drops a ceiling fan on your head....
another story, a man was biking home from work, the sun was very bright, and a teenager driving towards the bike didn't see him because of the blinding setting sun.. kills him.. Leaves a wife and kid... You don't know what is going to be thrown in your path.. You may not have that choice of being a burden to your family.. So,,, LOVE YOUR FAMILY as they may be taking care of you... LOVE THEM WHOLE HEARTEDLY.. NEVER KNOW WHAT IS AROUND THE CORNER. Your wife needs to do this. and it is okay... This too shall pass, as my MIL used to tell me.. I do miss her... LIfe is temporary. Take a deep breath.. and perhaps the right answer will come to your family...you too will learn from this experience.. especially with covid..
I keep thinking covid was just a thing until a neighbor died of it and his wife is in quarantine., and the news gives daily data on new patients and death... This is a rollercoaster ride to say the least. When will it stop?
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Yard work? That is a stress reliever... It is just a bit of being alone outside... pulling weeds... Who is going to grade you on yard work? The squirrels? I know, if you don't get a handle on it tomorrow,,, Saturday.. It's going to all fall apart... as mine did last month... The things men focus on sometimes... And you guys do just focus until this little bump becomes a giant pain in the eye to look at.. NOW IT'S A MOUNTAIN!!! nope it's like a pimple right in the middle of your forehead.. and you cannot ignore it... got to get rid of it... EVERYONE MUST SEE IT.. ... WEEDS IN THE GARDEN!!! What shall we do?LoL... Gardening.... yes, that is a better and softer sound than YARDWORK... If you really need to, ask your 10 year old next door neighbor to mow the lawn for $5.00. It may not be perfect, but the kid is getting $5.00 while you focus on another area of the yard.
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NOvember 2019... today is 2020... Are parents nearby? Can she come home for a bit? Now I read your story.... =They probably need to be in a board n care..for everyone's sanity... Have you looked? Have you discussed this with the people involved? MIL, FIL, WIFE.... Take tours of places near home so you don't have to drive so far? Get on the net, and start searching and making appointments to tour so you can see what is available....
also look in your neighborhood for homes with permanent wheel chair ramps. One story homes, clean, not much going on... rails, perhaps it's a 6 pack. :: 6 residents 2 caretakers in a one story home... knock on the door if you dare, and ask... You will most likely get your answer within 2 seconds of that door opening up. or look up the address on the internet.. see if it is a facility...Got muy LO's in a 2 minute drive from me all in the same home...
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Beatty Apr 2020
Down the track this direction for sure!

But right now MIL is singing her song "Don't need any help (from outsiders) - just need your help (all day long)". OP's Wife has been brainwashed by this on repeat.
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Mayday, both parents have been offered hospice and that has been rejected by MIL and by daughter.

This poor man is suffering. He has, for all intents and purposes, lost his wife. He is trying to extract her from the quagmire of caring for 2 bedridden patients with no other support "because MIL doesnt want strangers in the house".

The only way to combat this sort of thing is to have firm boundaries about how much support one will give to a crazy, unsustainable plan.

One hopes that in the absence of LH showing up, his wife will begin to see the light that she must insist that her parents hire/accept outside caregivers. If this couple is to have ANY time together, THAT is what has to happen. The ball is now in wife's court.
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PoofyGoof May 2020
Once again, WELL SAID BB!
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I’m guessing your MIL isn’t ready to let your FIL go. My mother was like that, even when he was actively dying she refused to accept the fact. Can you explain that hospice isn’t a death sentence, they can come off hospice if their condition improves? That is just more help? That being said Medicare pays for very little, basically a weekly RN visit ( Bi weekly now with Covid) and an aide fir 1 hr 3 times a week. Any other aides come out of your pocket anyway so why not hire one now whether you get hospice or not ?
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Judysai422 Apr 2020
Fyi...nurse still coming weekly to my mom in AZ, so it must vary by state or agency.
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No, I don't believe you are selfish. I think It's time for y9ur wife to hold a family meeting with her siblings outlining what THEIR parents needs are and what they can do to help. At the very least, they should be providing respite for her. What may help is developing a sign up sheet for the parents' needs and everyone take a slot. (grandchildren too if they are old enough). In terms of your father in law's dementia, while the attitude regarding it may bother you, unfortunately, you don't have decision making capacity. Hospice requires certain criteria be met for admission. If the siblings do not want to provide hands on assistance perhaps they should financially chip in to hire the necessary help. One question I'm going to respectfully ask you to consider is: does your wife prefer to do it herself so that she has control of the situation? It might not be a bad idea to seek counseling (with the pandemic it may have to occur virtually). to resolve the situation. One last thing: the area agency offers all kind of resources to assist older adults. Give them a call.
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The goal here is to get. your wife to understand this needs to stop. Now, how to do that? In my opinion, the only way to do that is to get her to face what she wants for the future. Not their future, her future. Your FIL should have hospice helping him. The MIL won't hear of it because of course she thinks if you have hospice in place, he will die. Well, newsflash, that is not going to keep him from dying. So she needs to have the GP order a hospice evaluation and just tell her mother, that this will happen. They will help with a lot of things and give great advice. As he gets to end stage dementia, he will not be able to eat any more or take fluids and he will die there, possibly with your wife helpless at his bedside. Is that okay with her?

Once FIL has passed away, she is going to be left with her mother. Is catering to your MIL okay with your wife? I mean really okay, not just what she says her duty is. Your mother in law could live 5-6 more years. If they have the means, once this current virus episode is done, they should move now before he passes away and she ends up with her mother permanently until MIL dies too. That could be years.

When your wife first went to live with her parents, what was the plan? Did she plan to be there forever, until they both died? Because if she does not get them placed elsewhere, or make some other arrangments that is exactly what will happen.
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LossingHope Apr 2020
DPM, thanks. Originally there was a sister involved and it looked like there would be teamwork involved. SIL freaked out on MIL over find poopy underwear in the laundry, and left. So my wife was stuck. I began to pitch in every other day after work. One night while I was on duty my FIL started screaming that he had to use the bathroom even though he had no strength to get up. There was crap everywhere and I called my wife back to the house because he didn't want my help and fought against me. The whole while my MIL laid in the next room and expected me to handle it. She could have at least sat beside his bed and helped. Anyway, at that point I told my wife I could only do three hours and not evenings when FIL becomes a bear. Started to leave work in the afternoons to facilitate that. Seemed like everytime I was there he had these issues. Again MIL sat at the table and seemed agitated, but always unhelpful.
So, I've quit on my wife.
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I agree that you find this situation intolerable. I agree that you are experiencing undue stress and it is placing stress on your marriage. Your unrelieved stress is turning into anger: at your in-laws and probably at your wife.

I suggest that you and your wife seek counselling to address the issues you outlined above. Your wife needs to understand how you feel about the current situation. Together, you can both discuss options that would lower the stress of caring for senior family members and allow time to have "time off" together.

Since your wife doesn't appear to complain to your about caring for her parents, you could start researching home health care and residential facility options. When you have some viable solutions, you can bring up the topic of respite care to your wife.
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Lossing Hope,
You are definitely in a hard place, and I applaud your decision to support your wife. We had a similar situation when my father was terminally ill and Mom (with early-stage dementia) refused hospice care for him. I finally asked her why she didn't want hospice and she replied that she thought they would "take over" and not let her care for Dad. Once it was explained to her that their job was to SUPPORT her in Dad's care, she accepted it and hospice was able to come in and assist him in his final weeks. Sometimes, re-framing the conversation can make a difference. Blessings to you and your wife.
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Yes. In a word.
As for not being a burden,...there but for the grace of god....none of us wants to be or expects to be but the reality is none of us know what the future holds and we could be...burdensome.
There are many unanswered questions here...and it seems the issue is your mil has turned down hospice for your fil? Or do you think your mil needs hospice?

Are your parents still living? Would you like them to be cared for the way your wife is caring for her own parents? Would you care for them? Or would you expect your wife to do it?

It's stressful for all. Both of you clearly need some respite and should check in with your local Area Agency on Aging for Caregiver Support programs. The puppeteer here seems to be your mil, but for sure you are adding to your wife's stress by controlling how much time she provides them. And you are not cut out for the caregiver role. So accept that, but don't add to her stress.

The virus has only added to everyone's stress. If you can afford it, get someone hired to do your yard work. That being an outside activity it is less stressful. Getting in home help can be challenging especially letting a stranger(s) in while this COVID is out there.
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LossingHope Apr 2020
Gdaughter, my father is still around. Lost my mother 3 years ago. My wife did not help with her care, as a matter of fact, she was not there on her last days as her statement was "sorry I'm no good at this stuff ". I didn't expect her to hold my hand, and I hold no grudge.
You believe that I'm being selfish and I respect that. I understand it's hard to make a judgment with not much information. What I've done here does hurt me. It doesn't feel good at all. Thanks for your honest answer.
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Do you have to tell your MIL that hospice is coming why not just say nursing to check on FIL. Also, that it is Dr's orders
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LH; a couple more clarifying questions...

Is poor FIL getting some sort of psych meds for his agitation and hallucinations? If he is a bear at night, that probably indicates that he is sundowning. Is his doctor aware of that? Is the visiting nurse?

There are effective meds; he shouldnt be suffering like this.

Incontinence is a deal breaker for at home care for most of us. I wouldn't fault your SIL. Nor do I fault you.

It sounds even more as though MIL has developed Vascular Ddememntia, given your description of her passivity.

Does your wife know anything about dementia care? Does she watch Teepa Snow videos on tips for the management of dementia patients?

And finally, who holds POA, financial and medical for your in laws?

It sounds like there is terribly little information being shared in this family, even just between you and your wife.

In your shoes, I would find some source of mental health support to help you ask the right questions and get straight in your head what your role should be. Framing this for yourself as "selfish" isn't helpful. You are putting on your own oxygen mask.

It sounds to me as though there is a lot of blame, shame and silence around all of these issues. Please get yourself some support (maybe through VNS).
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For people... even relatives to say they won't help.... or can't help because they just can't stand dealing with other peoples' poop... that is immature. Tell me... or ask them... "What if there is the time THEY need help because they can no longer keep themselves clean and everyone says, , "Nope... sorry.. can't do that. Can't stand poop?" They have been wiping their butts their whole lives... I take it... so... just to let you know... THEY ARE JUST USING THIS AS AN EXCUSE TO NOT HELP. Plain and simple. Other family members....GROW UP! Family members can do other things. How about feeding them... grocery shopping...cleaning the house...doing medications... bathing....laundry,....making beds.....you name it. How about "delegate"? The thing is... if EVERYONE helped in some capacity, it would NOT be so hard on any one person. Also... about the MIL... MIL cannot make good decisions. You cannot listen to her. SHE is NOT the one doing the care, being responsible so then, she cannot have the responsibility to make those decisions. IOW... the one doing the care is the one who is to make the decisions. It is easy to "call the shots" when you are NOT the one having to "do the shots". I would resent too taking care of anyone while I don't get to make any of those decisions. I work in home health. Staying at home.... not what it is cracked up to be. Yeah.. they want to stay home. I have a patient right now... see it all the time, the patient makes the decision, "I want to stay home" but they can't do anything for themselves. They get to "stay home" when they ARE taking care of themselves. When they can no longer do that to a certain degree....then they cannot make ALL the decisions for what happens to them because NOW, others HAVE TO BE INVOLVED IN THEIR CARE because they can no longer do their activities of daily living. Most cannot even reason things out... they really have no idea what is going on... for the most part.. WHAT OTHERS ARE GOING THROUGH TO MAKE SURE THEY ARE TAKEN CARE OF. With dementia patients,,,.. they no longer can be reasoned with. They do NOT understand what others are going through so do NOT expect to be able to go to a dementia patient, talk to them about what is going on and they will be able to understand. THAT is NOT going to happen. I hope your wife understands what is happening... expects MORE help from family and they do help. Also... call some services and ask for what to do. GOD bless.
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BarbBrooklyn Apr 2020
These folks (MIL and FIL) have the money to pay for care. They prefer to destroy their children's lives. To me, THAT is where the selfishness is located.

Folks often "Bible-thump" here. Thou shalt not uncover the nakedness of thy father or thy mother. I take that very seriously. I don't think that not wanting to see mom or dad's private parts is 'immature". I think it is fundamental to our natures.
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lossinghope, the bottom line is, if she can’t be in your world, then YOU can’t be in HERS.
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MAYDAY Apr 2020
too much drama.. He doesn't want to lose her, I don't think. Think they still have a marriage worth fighting for. They just need to get the in laws to move closer and/or into a facility of some sort, covid is going to be harder. Hey, maybe the hubby should step in for a few days.. Tell in-laws, Hey, Tag I am it for a few days.. My wife is stressed out and I am giving her a few days off :) Then see what happens... IF those old folks have other relatives, perhaps everyone should start taking a day or two, till they get into a facility...
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You can’t make siblings pitch in and help. That is a rare thing when a sibling helps. Siblings are not obligated to help. In a perfect world siblings would help, but we do not live in a perfect world. What about all of the ONLY adult child? They have no siblings.
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I just lost all that I typed. I am with you l00%. This has to stop. It does not matter who they are or what the relationships are. If the behavior of these people is causing undue stress and turmoil and other problems on you, then you must take the bull by the horns and take immediate action. If no medical or other intervention will stop it, then there is no choice but to place them somewhere tht they will be safe and cared for. They have lived their lives and now it is your turn to live. Some children have been "brain washed" all their lives that they MUST take care of their elders. That is just wrong. Not everyone can be a good caregiver for all kinds of legitimate reasons. Children are afraid to speak up. I suspect this is the case with your wife. As to the MIL, I think she has some dementia and wants to feel in control and is causing even more problems. I personally could not and would not put up with it. If need be, you will have to see that something is done. I doubt your wife can or will see it.
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About Hospice.... some people don't want other people in their home. They don't want to be given baths by other people... to be seen naked. They don't want to deal with any other people... more decisions to make... more people to have to deal with. Sometimes they "forget" even after they have been told many times, you do NOT pay for hospice care. I have worked for hospice as nurse and home health aide. First of all, the aide is not there for more than an hour each visit. Most of the time, the aide may be there giving care for about half an hour. Besides the bathing, they can shave, brush teeth, brush hair, clean nails, ( no cutting of nails) get them dressed and change their "depends"... clean the patient after they soiled themselves, and make beds.. put on clean linen. But again...did bathing ALL THE TIME... (patient can refuse... we cannot force them to take a bath) but... if they refuse a bath,... the aide usually leaves and goes to next client. THAT is the way it worked for me when I was taking care of hospice patients. Aides do NOT stay for hours. When people give excuses such as, "I cannot stand that poop", normally means they just are looking to find an excuse for not doing something they don't want to do. This is sad. They are actually abandoning someone but they would be the first person to expect someone to take care of them when that time comes. And many times.. IT DOES COME.. and then what? Taking care of people should NEVER be what is called a burden but it does become that... when what has happened to you and your wife. Your wife feels guilty.,,,.I had the same thing happen to me when it came to my mother. Your MIL is "not in her right mind". She does NOT understand what is going on. Others need to make those "right decisions" and what is happening with you all now, is NOT right.
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LH Another question that you may want to ask your wife if you haven't already is what happens if your wife becomes ill? Does she have a backup plan for her parents care if she is sick (It already appears that her siblings will not be available to assist) ? Unfortunately chances are great that your wife will get sick, if from nothing else the stress of caregiving. If your wife does get sick then you will more than likely be the one responsible for caring for her. I pray that this works out well for all of you.
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Riley I hate when that happens, when you lose all that you typed. It has happened to me multiple times on aging are forum.
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Your wife has MOVED out of her marital home. That is a huge thing. All she is doing is using you for a Gofer. When do you have time for sex? and I don't mean a quickie between bites of food. At your age, you are way way to young to give that up. What about the part of the marriage vows that say, "Forsaking all others".

One of the reasons my last marriage broke up was the stress of caring for a mother who only thought of herself. It was MY mother and my husband was on her side. I left, never looked back, I swore I would never remarry. My current husband talked me into it after dating about 12 years. We had 12 years of dating (didn't live together) and 18 years of great times before he got Alzheimer's.

When I was your age, I was still going to fires, That year I went to Alaska for a fire assignment. I was on the Riverside Mountain Rescue Unit and jumped out of Helicopters, When I was 53 I was part of a group that climbed Lost Arrow Spire in Yosemite National Park. Look it up. We figure we set a record because I was the oldest woman to do it. I will admit, I got hauled up part of the way.
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LossingHope Apr 2020
Sex? You go girl.. That's cool that you say what everybody is thinking.
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You certainly have lots of support from the forum. Do you have a pet? Maybe now would be a good time for you since your wife is taking care of your parents. I am so sorry you are having a difficult time and if your wife cannot go or will not go to see a counselor - go by yourself.

Your wife is really in a "stressed position" and a counselor could help you when you need to vent - I wouldn't take her staying at her parents as a personal thing against you. Be careful, you are in a vulnerable position right now and it would be easy to find solace for your situation.
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If my spouse moved out of my home for 6 months and refused to consider any sort of in home help AND refused to have a conversation about the fact that single-handedly taking care of two bedridden parents is an recipe for poor care and a steep decline in my spouse's health, I would not be turning to my pet.

I would take it that my spouse had abandoned by bed and board. In most states, that's grounds for divorce.

I have no idea if that's what is in the OP's spouse's head. But certainly, from his description of her conversations with him, she's not looking at this situation rationally.

And just as a sidebar, her father is getting very sub-optimal care. She is negligent and willfully ignoring her parents' very real needs.
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