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We have been caring for MIL at home for the past 6 years who needs around the clock care because of dementia. We have managed to share responsibilities with other siblings/ caregivers but most of the responsibility falls on us as I am married to a middle child who was very close to his mother. LOVE THE MAN! We are in our mid 30's and lower 40's. and still building a family. We have infertility issues that have not been addressed because of all the time this illness has taken from us. Finally husband and I are getting treatment and will be soon starting a family . THANK GOD! We cant afford to stop working so I am a little concern about the future, our relationship, bringing a baby to the world in this situation.
We have so much in our plate but at the same time I am getting older and dr. advise my egg count is very low so we need to hurry up. This puts more pressure. Putting her in a home is not an option . There are times he goes into her house for 2 weeks because the other siblings cant cover. This of course brings a lot of stress.


What I would like to know is the following:


1. Has anyone try to raise a family, work and care for a dementia patient at the same time? How? Results?


2. How long can we expect her to be around? Is it bad that I even think about this? Feeling guilty.


She has been wearing diapers for the past 2 yrs and needs everything done for her. During the night she will not sleep and will talk nonstop which is making caring for her very difficult. Sometimes she does not want to eat and is losing mobility.
-No other health conditions


3. How can we manage her sleep pattern better without increasing medication and what are the consequences ?


4. How do you reduce her having to pee so much at night? We put a tick pad inside diaper, she will still wet the bed and then take diaper off and pee more and sometimes the #2


5. How do you keep your sanity?


6. How do you set healthy boundries and admit your limitations?


This illness is the worst. I married the love of my life at age 27 and for the past 8 yrs have supported him through his mom's illness but I also belive he needs a family for when she is gone and don't want us to lose that opportunity and fall into bitterness later. Will appreciate your advice.

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Stress alone, can cause infertility. Think about whether you would really want to bring a baby into the stressful life you are living. Babies are exhausting too, but add to that an elder with dementia, very difficult. What if mom sees the baby as competition for your attention? Does mom have bouts of agitation?

You say it is not possible to move mom to a facility. Why not? You and hubs have done plenty and have too much responsibility for her. Time to shop for a facility for mom. You and especially the baby deserve the comfort of a home that is as free of stress as possible.

I see on another point st of yours that it is our responsibility to provide the best care possible to our elderly. Is that what mom is receiving? She is being taken care of by two people that are exhausted from the day to day caring and the other responsibilities of stressful jobs and life. That is very likely provided in a facility where the day to day is for the trained professionals and advocacy is for family.
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Erica, Long story short, if putting her into placement is not an option at all, I have no answer EXCEPT to say, your asking how long this can last is normal, and there isn't a soul on earth who wouldn't ask that, out loud or within.
As I said, without placement I cannot see an answer. You gave us a stage and I guess someone out there in google-land will have some charts and grafts that will guess at the amount of time that is left, but the truth is no one can really tell you. If you want a guess the people who work with her medically would be the ones to give the best guess-tamite. And I doubt they would be too shocked at the question: "In your professional opinion what sort of timeline are we looking at".
I cannot imagine bringing a baby into this. There are things you cannot know until you have been there about sleep deprivation, hormonal stuff that can sometimes cause severe depression; it isn't all joy, and the frustration may bring you to acceptance to know that you are not without limitation.
I am so sorry you are facing this down. I DO know my limitations. I would not have lasted a month caring for a (even much loved) elder on my own, and I spent my career as a nurse who LOVED my profession. So sorry for all you are facing.
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Putting her in a home is the ONLY option. She needs the professional care and you and hubby want a child. Yes, stress is often a major factor with infertility. Place MIL before you have a child. This too will pass.
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ERICA1 Aug 2020
Agree 100% !
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My grandmother lived 10 years at the end stage. She too was healthy other than the dementia, which caused her to not be able to care for her own needs in any way, shape or form.

They get to a point that they really do need a village to care for them. I would not decide that a facility is completely off the table.
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Holy hell girl put her in a home. Bringing a baby into the world amid that lifestyle sounds incredibly cruel. If a home is not an option, move a few hours (minimum) away so you dont have to deal with her so much.
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PeakShale Aug 2020
Off topic, sort of: The world is hugely overpopulated and running on finite resources (still denied by many) which gives another reason to not have kids, but people tend to look at their own small situations.
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No you are no a bad person for thinking that.. you’re human. I am currently taking care of my MIL & I think that on a daily basis. I can answer one of your questions about her taking off her diaper at night: put a one piece pajamas on her backwards. The zipper or buttons in the back. I had to do that w/ my mom when I cared for her. When the time comes that my MIL starts to do that, then that’s what I’ll do. Good luck with your present & future family. Linda
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In the very most loving and fair way for ALL of you, “putting her in a home” needs to “become an option”, and if it doesn’t become an option, you will need to put you well deserved thoughts and reams on hold, and be prepared to sacrifice them altogether.

SO- deal with “guilt” which, when you think of it, is a totally useless and damaging reaction to circumstances that will continue every day to become more unmanageable, as Mom’s needs increase.

As I’m sure you will have previously been told, there are many factors to infertility, and adding stress is never a good idea. And you WILL feel bitterness if you don’t address the reality that the time is approaching when her care needs to be undertaken in a safe place where they will be met by trained specialists.

Sometimes the IDEA of not placing a LO can exceed the reality of what home care inevitably becomes. You may already have reached that point.

The questions you are asking have no reasonable solutions within the structure of the life you are looking for, and are entitled to.

Ask yourself and then ASK YOUR HUSBAND- if she were aware that a grandchild would not be born because of your current responsibilities would she want you to continue as you are?

Last point, when caring for a significantly disabled LO, you sometimes co e to a point at which there are NO PLEASANT DECISIONS AVAILABLE. What you then must do with love and respect, is to choose the least bad decisions of the bad ones.

I had 2 cherished children after the age of 38, after a long terribly difficult infertility history. Please consider my comments carefully.
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First, I wish you both God's choicest blessings for the wonderful care you and your husband are providing mom.

Aside from the splendid care you both help provide, I agree with others that she MUST go into a home. If the long pole in the tent, aside from your emotions, is how to fund putting her in a home, then whatever her assets are, including selling her home, should be exhausted, and then she should be placed on Medicaid. You will need a qualified eldercare attorney to help you with this. (I say qualified, because in my family's case, I spoke with three so-called elder care attorney before finding one who knew precisely how to handle this work. The first three just didn't know enough to be of any help.)

Emotions are sometimes nearly impossible to handle. We must learn to separate how we feel from what we do.

I wish you both god speed in making the situation bearable.

Grace + Peace,
Bob in North Carolina
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I really feel for you, my FIL passed away a week ago, he had vascular dementia - he became immobile, incontinent and all the other behaviours you mentioned about 1 year ago - it’s a terrible disease and I really feel for you.my SIL cares for my FIL in his home with her family - it’s rewarding however her marriage and children have sacrificed a lot. We helped as much as we could but she carried a lions share and it wasn’t easy. Every patient is different, and I wish you all the very best in this difficult journey xx
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You are not alone in feeling the way you feel. I think in years past there was a lot of stigma and fear around placing elderly loved ones in a home, but there have been a lot of changes over the years. More regulations and oversight have been put in place than in years before, family is allowed more visitation and involvement in care, and greater technology (eg. security cams, timed computer logins,etc) make for more detourants for would be abusers and make care management more organized. Maybe touring some facilities to see for yourself would help put you more at ease. She is likely safer in the facility than in your house where there is access to stove tops, knives etc. In the facility she won't have access to things that could harm herself or you all.

If its a money situation that makes the option feel impossible, there are a ton of programs out there that can help. Look into your local Area Agency On Aging and ask about resources for funding her placement care or just look into your state assistance web pages and I am sure you will find more options.

We all will grow old one day. I know I would never want my need for care to rob my daughter of her chance for a family of her own. Would you want to do that to your future child when it's your time? I believe, like all the others here, placement is the right move for everyone. Just need to get more educated about it so it doesn't feel so unsettling.
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If you can afford it, find a facility to take her to. If you had a loved one with a serious physical condition and needed an operation would you decide to preform it yourself? Dementia is no different. You aren’t qualified to give her the care she needs. Her toilet habits are setting her up for UTIs that can literally kill her at this stage. Both my mother and stepfather died due to their dementia spiraling down due to a UTI. Please do her and yourselves a favor and either get 24/7 professional help in home or find a memory care facility for her.
If you look at it logically rather than emotionally the fact you are having a hard times means the situation is beyond your ability. That’s not a crime, that’s a normal limitation. We all have them.
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Yes, this illness is definitely awful. I think most people wonder at some point when the end will come for their LO. Admitting the feelings is helpful. So is talking with other people in the same situation, as in a support group.

I'll be frank: Yes, your MIL has all the Alzheimer's/dementia signs that all caregivers struggle with and have to make decisions about. But your biggest issue is your husband. He has put caring for your mother before your life together and it's negatively impacting any long-term plans you have/had. In fact, his need to care for his mother is pushing your plans off the page. Does your husband even want to have a child right now or is this your dream? I would suggest some counseling for the two of you to sort this out to be able to determine what lies ahead for your life together and if a child is part of that future.

Your MIL needs 24/7 care. She could greatly benefit from being in a community that provides her with this. The stimulation of others around her may actually be beneficial. If not a MC, then night-time caregivers at home so that you, your husband, family are not up all night with her. Has she been evaluated for a UTI that may be causing increased problems with urination?

There are no easy answers here except to start digging past what's happening with your MIL to prevent the bitterness you're afraid will creep into your life.
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Thank you for this advice.  I also am in the same boat, and am ready to put my MIL in a home.  She has been with my husband and I for almost 18 months and getting worse by the day almost.  The only problem that I have is with the quarnatines right now.  They would put her in quarantine for 2-3 weeks and with her being able to get out each day with her care givers and myself, I just cannot do that.  Some days are totally exhausting.  I cannot imagine trying to start a family with the rest of it.  My career and dealing with her and her issues is almost too much.
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I can tell you this, my Mom who has had dementia for approximately three years has thanked me repeatedly for "not putting her in a home"...when, in fact, she's in the memory care unit of an assisted living facility. Let go of the guilt that comes with that option. The only way to get some sanity (and probably save your marriage and enable you to move forward with your family) is to consider care options. The burnout is real. I can tell you from experience that caring for someone round the clock with dementia is more difficult than raising children -- you'll be well equipped and prepared, but you'll need the time and sanity (and sleep) required for that.
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Mrsrubee Aug 2020
I just LOVE this response! We sometimes forget that they're not living in the same reality we are. I was raised to value the truth above nearly everything else and I absorbed that message well. But dementia changes everything and I have become a facile liar as I try my best to agree with my husband's view of the world. Jerilyn G, you have so lightened my load as I sometimes think of placing my husband in care. I forgot that he is likely to see it totally different than I will and that his quirks could possibly work in my favor.
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I hear that one dimension of your stress is the time limit for starting a family. But adoption has no time limit. My niece is adopted from Vietnam, and is a greatly loved part of the family. I hope you will consider it.
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jacobsonbob Aug 2020
That's true. Another option is using a surrogate; I know of a case in which that was done three decades ago with success. It was quite expensive; perhaps it is less so now.
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Infant grandchild taken by Grandfather with dementia who wandered. Found by Police in a local supermarket - no harm done. Can you imagine the panic & distress of the Grandmother & parents finding the child missing? The arrangements were started immediately for nursing home admission. True story.

An elder who needs 'everything done for her' as stated will have to take 2nd place to a baby. She may accept this??? but also may become demanding/jealous/act out. Nap when baby naps - how will that happen? Overnight feeding? Crying baby disturbing MIL or MIL disturbing the baby?

I suppose it worked in the last century so I suppose it could work... but I would look for another option. Your MIL needs care. That does not mean you have to provide it 24/7 & forgo your future.
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My sister has LBD-very near if not already in stage 7. Which is very very challenging. For a hot minute, I thought about bringing her to live with me as her last community was awful-loosing weight, injuries, and a long list of other issues as her abilities declined. I knew I would not be able to sustain her care for the long term-desparate to get her out of the bad place. Took almost 6 months to find a good place that would accept my sister and all her behavior issues. I do wonder a tiny bit about her time left but not at the top of the list. Can not be in the room with her, hold her hand give her a hug-which i know she is missing me terribly and tries to communicate this. Window visit better than nothing but not enough for her or me. Trying to make the best of a horrible situation-knowing it will cause the end of her life if covid doesnt. I try to take one day at at time-i do not to focus on how many days or years we have together. She incontinent, and cries all the time-loud-moaning for hours. I would be afraid to have her here-she could be frightened and confused by my immediate family or think that she could stay here permanently. I can not do the work of 10 people period. The community does not let residents "go out" unless and emergency and would be quarantined when they return.

My parents are 95, living in their own home with caregivers who are a mixed bag. Parents refuse to go to facility where i believe they would get more consistent care-cheaper than home care. My mother refuses to consider the health of my father and what can be done to help him. My mom does not consider how much time i spend with them and doing stuff for them. I have been keeping track- ranges from 5 to 15 hours a week. Now more time needed as dad is in the hospital-mom does not drive-i take her to see dad. One other family member does not do anything unless is convenient for him to do so-will not even answer his phone when he can see it is mom calling. Mom is has her fantasy that dad is great strong healthy. not true has many issues and been in the hospital 4 times since october.

I am always exhausted I had a short time out due to covid-in the beginning.
I felt like my normal self able to do for my family etc.

Mom says horrible things to me -like i know you (me) wish they were dead because it is so much work all the time and worse-while also laying a guilt trip on me about i am supposed to take care of them. I am positive she does not say this to the other lazy sibling with no job and nothing else to do all day except whine a out his life. If you can possibly find some kind of balance-do it and do it now-boundaries are hard to maintain the line seems to be a moving target every single day.
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If you can afford it, I recommend a Memory Care Facility. They are very expensive because they can provide one on one care.
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Can u Not get carers to come to the home, I'm a carer, the lady I care for is 95, with dementia, she recently stopped eating and drinking but has started to eat mashed foods only and drink sips here n there she was on trazadona and risperdona to help aid sleep at nights and keep away psychotic episodes, she also uses dopers with an insert, her mobility is becoming less but then other days she's up walking with frame, she can no longer communicate verbally so I need to watch for non verbal communication. Maybe you could get a carer to come some days just so you can have rest. Or even just overnight so yous can sleep. I am a mother of 2 small boys 3 and 5 years old I work 3cdays 1 week and 5 days the next and that keeps running like that every week. My partner has to deal with our kids at home while I'm at work it's hard at times as I don't see my little ones a lot but we get by. I do housework and ironing when home so he gets some rest too
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Why isn't putting her into nursing care an option? You cannot deal with a baby and her at the same time!!! You won't survive! And you won't survive a pregnancy under these conditions. What's the deal with the other siblings? Do they hate both of you? Are you masochists? You need to take care of yourself now or there won't be any children.
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Dad’s on Hospice with Alzheimer’s and cancer. He hasn’t slept well at nite in more than 5 or 6 years. Hospice nurse said Alzheimers is like diabetes of the brain. Cut way back on sugar, keep him up more during the day and his sleep patterns will change. It’s been 2-1/2 months since I brought him home from MC lockdown nightmare. He doesn’t get anything sugary after lunchtime, except a few pieces of fruit if we’re struggling to keep him up. He’s sleeping 4-6 hours at a time, having his brief changed and going back to bed. He’s clearer, has better disposition and even looks rested! It’s been incredible to watch! He’s 90 and wheelchair bound, stage 6 now. To sweeten things we’ll use a littt Th le local honey or fresh fruit and he drinks mostly water or milk. You might give it a try. Note: he lost a little weight once off sugar, but looks and feels much better! Good luck!
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One question I have is about something the OP didn't provide--how old is the MIL? Just guessing from their ages, I would suspect the MIL is probably in her 70s--if so, and if she is relatively healthy other than the dementia, she may live several more years or perhaps a decade, and this must be taken into account when planning.

It will be a shame if Erica, at the age of 50 and childless, sits around wishing her MIL had been in a facility during the years she could have spent giving birth and rearing a child!
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Talk to your friends who have children and work about how they manage those aspects of their lives 24/7/365. You may find that small children require a lot of attention from both of their parents. Use the information that you glean from them to have a series of discussions with your husband. Decide together how you will prioritize your marriage, then your future children, and finally your MIL.

It appears that MIL may need to see a doctor about her sleeplessness and nocturnal urinary issues. I would also suggest that it may be time to hire care for MIL during the night, and probably the days when everybody is working. Another option is probably a residential memory care unit since she seems to require more care than is allowed for adult day program or assisted living.
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For sleep try melatonin, a natural herb.

Take it 1 hour before bed time, it helps reset the body clock and seems to work well. Not sure with advanced dementia but worth a try and don't think it can do any harm. Was suggested by neurologist.
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Though it is expensive, you can get in home nursing care. That is my best suggestion.
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Patathome01 Aug 2020
She can also spend down to Medicaid eligiblity for home care?
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If you think you've got troubles now, wait till a baby arrived! Dementia will get worse. What reason can't elderly person go to facility? That's where she belongs. If you refuse faculty you've got troubles!
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I am not sure why you and your husband think it is so horrible to put her in a facility where they have three shifts of people who have been professionally trained and have the equipment to manage your mother in law 24/7.  There are some fantastic facilities out there.  I think you need to visit several before you totally rule them out.  If you don't think you have any time, money or sleep...wait until you add a baby into the mix.
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In my opinion, I can not believe that anyone would tell you to put your loved one in a home or facility!! Obviously they have never spent time in one. If they had, they would know how awful, horrible and terrifying they are. My experience, even with these so called 5 stars facilities are all BAD!! There is only one caregiver for 15 to 25 people. So that does not give much personal time to your loved one.
Once, in this so called 5 star facilitiy, I was with my mother and they told me that I could not help her to the bathroom, we had to call for assistance by an employee. Well we pushed the call button and NO ONE showed up for 2 hours. I ended up taking her to the bathroom my self. Then at another facility I went to see my mom early in the morning from just admitting her the night before. As I was walking to her room she was in the hall in a wheel chair, crying, shivering in just her thin nightgown. As I got to her she held me so hard saying "PLEASE, GET ME OUT OF HERE". That afternoon I had her back home. And this happened with several other facilities, one that let her fall and get massive skin tears, another that when she fell in the bathroom and after no one came to help her, she tried to get to the bathroom herself and she fell and was laying on the bathroom floor for hours before they checked on her!
Again, I can not say it enough, IF YOU LOVE THIS PERSON THEN PLEASE DO NOT PUT THEM IN A HOME OR FACILITY!!! These places are where you send people to die, alonely.
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disgustedtoo Aug 2020
While we can respect that you have had bad experiences, posting like this does NOT do anyone else any good. It sounds like your mother was in a NH. There are "bad" places, whether they are NHs, ALs, MCs, but painting them all as hell holes does not help others. Saying they are 5 star places doesn't help either. ANYONE can post 5 star ratings on a pile of dog crap. I based nothing on any "reviews". I found places in the area near where I live and I VISITED them. Look. Listen. Ask. Smell, Taste. Yes, TASTE - we were offered a free meal in the place during our "tour" with mom. USE your senses, not these stupid reviews.

There were 3 local places, but one was what I think is called continuing care. These require a HUGE up front payment in addition to monthly fees. To this day I don't understand what that payment is for - it isn't used to cover the monthly rent. I crossed that off the list immediately. The first of the other 2 was less than ideal. I didn't care for the layout, and in particular was concerned that the MC unit was on the 2nd floor - in an emergency, when the elevator can't be used, how do you get all these dementia patients, many with walkers and wheelchairs, out? Nope. Before we arranged to see/inquire about these 2, YB found another. It was nice, newly built, just about to open. It was more the location, room setup and cost that took this one off the list for me. Sure, it was about 5 min from where he lives, but more like 40m for me and I already KNEW I would be the one doing most of the advocacy (supplies, payments, visits, etc.), so the distance would be an issue, esp in winter. The location and view was awful. The room we were shown for the quoted cost was SHARED - 2 BRs, one bath, no closure AND looked out over the parking lot and 4 lane roadway. The last place was still in the process of being built. It had been really old buildings and the decision was to tear down and start new. We could see the pix, ask questions, etc. The deposit gave us first choice in room location (all look out into an interior garden) and was refundable. We went to the open house with mom, and later for a special tour (they opened in stages, IL, then AL, with MC being a bit delayed until they had a few residents lined up.)

This place is private pay and mom has been there about 4.5 YEARS. It is nice enough that if I were to need such accommodation, I WOULD want to go there. The staff is great, the place is clean and nice. I wouldn't hesitate to recommend it to anyone!!! I have no idea what their "rating" is and I really don't care. I can SEE for myself that it is a very nice place.

So, relating your own bad experiences can be helpful, IF you temper it with guidance to LOOK at the places yourself before making a decision. Please stop painting all facilities with the paint from hell.

(BTW, I tried bringing in aides, just to get her used to it so we could let her stay in her own condo for as long as possible. 1hr/day M-F. This didn't last 2 months when she refused to let them in. YOUR alternative might work for some, but there are MANY reasons why I can't care for my mother - logistics, her weight, and my place being stuck mid-way through renovations are among the top. She is doing VERY well in the place and they are doing what I could NEVER be able to do for her.)
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Wow. So many things going on here. I originally began to comment as in my dads case his stage 7 was very very short, of course he over ninety when first diagnoses and his last stages were exacerbated by a couple of bouts of pneumonia.

That said, in your case I dont know how you can or can be expected to keep this up. You have your own work and family planning issues to deal with and hopefully then little kids in the house

I would think for everyones benefit, including your moms, she has to be put somewhere who can give her the care she needs. I was very close to my dad and wanted to keep him in his home with my mom but my mom didnt want that and even though I said I would help a whole lot, to be fair it would be her burden and decision.

I guess the point is I know what your husband may be feeling, may a sense of duty to care for mom until the end and perhaps feeling putting her in a facility would be a sense of abandonment. I felt those things but NO one in this scenario can go on like this without losing sanity.
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I am going to add an option I do not see. Freeze your eggs and hubbys sperm. Wait. Cryopreservation will keep your eggs viable, when the time is better, do an invitro and have them implanted. I had my MIL moved in with us when my third daughter was on the way, she was functional but cranky, as time went on and a fourth child arrived, her mind deteriorated, and ultimately we had to pass her to another family member. My youngest just turned 31 this year, and Grandma Mary passed last year. She was in a SNF for the last twenty years of her life. She was 91. Keep your MIL at home for now, look in to home care aides,either through an agency, contact your local Aging and Adult office, find out if they have the IN HOME SUPPORT SERVICES. IHSS. program that allows Medicaid to help pay for either a family member OR a "lay caregiver" they have screened and trained to come help.
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LS2234 Aug 2020
One reason for trying to keep a LO home as long as possible is that it can help, a little, with the mental state. Familiar surroundings and objects help ground the person in reality, trigger memories such as basic skills of hygiene and function, things we do by habit. It can be very disorienting for someone to move into a new place, whether that is a childs home or a facility, as a lifetime of reflexes and body memory are interrupted. Things like walking exactly ten steps to the bathroom, turn left, sit on the commode....
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