Not sure what I’m asking, dementia related

[prairiewindmomma]

26 minutes ago, mlktwins said:

@saraha please hold back this week and let it play out.  It is sad, but it needs to happen.  It is the only way the current trajectory will change.
 

I’m sorry I was so wordy yesterday.  It is a subject I am now very passionate about.

I hope you feel better soon and your DH’s eye surgery goes well.  He really should take the weekend off and not risk his eyesight. 

Yes, be sick this entire week and then at the end of the week (not now!) tell SIL that you have realized how much your kids are getting impacted by the situation and you can’t keep doing what you are doing. Emphasize that with time to think about it, everyone including SIL and especially FIL is getting worn down and the current pace is unsustainable and two afternoons of help isn’t nearly enough.

But for now, be unavailable, completely unavailable.

Edited February 2, 2022 by prairiewindmomma

[Harriet Vane]

Re length of time from a couple posts back—

Yes, it may really actually be 10-20 years. I am not exaggerating.

My mil was deeeeep in dementia and incontinence and all the stuff for a solid 10, with several years of flaky and high-maintenance before that. My grandmother followed a similar trajectory. Alzheimer’s takes a long, long time. For both of them, everyone thought that it couldn’t last much longer when it actually stretched on and on for years.

My fil had a much faster journey of 3 years because he had Lewy body dementia. That one goes 3-5 years from onset. But most dementia patients do not have Lewy body.

So I will be blunt just for the sake of clarity. None of what you describe to me sounds like death is imminent. At all. My prediction is that you have years in front of you.

[Spryte]

2 minutes ago, Harriet Vane said:

Re length of time from a couple posts back—

Yes, it may really actually be 10-20 years. I am not exaggerating.

My mil was deeeeep in dementia and incontinence and all the stuff for a solid 10, with several years of flaky and high-maintenance before that. My grandmother followed a similar trajectory. Alzheimer’s takes a long, long time. For both of them, everyone thought that it couldn’t last much longer when it actually stretched on and on for years.

My fil had a much faster journey of 3 years because he had Lewy body dementia. That one goes 3-5 years from onset. But most dementia patients do not have Lewy body.

So I will be blunt just for the sake of clarity. None of what you describe to me sounds like death is imminent. At all. My prediction is that you have years in front of you.

That’s been my experience as well. It’s a long, long haul.

[saraha]

My bil mentioned Lewy body dementia as a topic for sil to bring up with doctor. Doctor said she’s not qualified to diagnose kinds of dementia and referred them to a neurologist.

[Harriet Vane]

One further thought—

If your in-laws had diabetes or cancer, they would be under medical management. There would be regular doctor appointments and assessments. 

It makes no sense to treat brain disease any differently. At the very least, there needs to be ongoing, regularly scheduled doctor’s appointments. Get a neuropsych workup with someone who specializes in geriatric care. Have in-home evaluations by an agency that specializes. You will likely need a doctor’s prescription for that. But rather than guessing, there should be quantifiable data at your fingertips.

Also there are prescriptions that may help with incontinence, mood, and sleep. They are hit or miss but they are options to explore.

[fairfarmhand]

2 hours ago, mlktwins said:

@saraha please hold back this week and let it play out.  It is sad, but it needs to happen.  It is the only way the current trajectory will change.
 

I’m sorry I was so wordy yesterday.  It is a subject I am now very passionate about.

I hope you feel better soon and your DH’s eye surgery goes well.  He really should take the weekend off and not risk his eyesight. 

This is what needs to happen. 

1 hour ago, City Mouse said:

I think you getting sick was a blessing in disguise. Whatever you do this week, don’t volunteer to go over there and start taking care of things. all the family members need to get a more realistic picture of the parent’s needs. Things will probably get worse before they get better, but I hope that you can feel okay with the fact that you are doing more good in the long run by providing less help now.

YES! And guess what... if you jump back into the fray, you probably will have more illnesses that end up like this. Colds that turn into 10 day long illnesses, stomach ailments that take over a week to recover from. Stress wears people down. 

1 hour ago, prairiewindmomma said:

Yes, be sick this entire week and then at the end of the week (not now!) tell SIL that you have realized how much your kids are getting impacted by the situation and you can’t keep doing what you are doing. Emphasize that with time to think about it, everyone including SIL and especially FIL is getting worn down and the current pace is unsustainable and two afternoons of help isn’t nearly enough.

But for now, be unavailable, completely unavailable.

Yes I totally agree with this. PPs have mentioned how they missed time with their kids....the Kids also miss that time with their parents. And they NEED it. Badly.

[Spryte]

Did FIL and SIL make the appt with the neuro? 

[saraha]

I haven’t heard if they did but I would assume so. They’ve never had trouble with taking her to the doctor, they have been chasing a pill to cure her for a year now.

[Stacia]

Not sure if this has been mentioned yet, but do any of their doctors have a social worker who can do a lot of the legwork for your family in re: finding & setting up care (in home or in some type of nursing facility)? Regular doctor, neuro's office, ...?

You have done a lot, but things will only continue to go downhill. It's better to use any help that's available to get stuff set-up (even just some initial evaluations) before things (including your health & sanity) devolve.

My mom is in the end stages of cancer (& we are doing in-home hospice with days, at most, remaining). In the past few months, we have dealt with social workers at the hospital, a rehab center, & through the cancer doctor's practice. While they have all been great, the social worker through the cancer office was the most helpful & assisted us in getting set up with a great hospice company.

(Also, fyi, hospice is not always just end of life. You can start hospice, then opt out, & restart again at a later time if needed. Just ask for help & guidance of professionals. We have found them to be incredibly helpful in navigating the paperwork, costs, coverage, supplies, & actual hands-on help.)

[saraha]

I know my sil called our area agency on aging, but felt like she didn’t really get help there. No one has mentioned a social worker although her doctor gave a referral to a home health agency.

Sil must really be feeling it today, she has sent a few texts about them and their care today. To compound her worries, there is an imminent ice storm predicted, with potential wide spread power outages. We have a wood stove as an alternate heat source and they have a propane heater so in laws could go to either place but will probably end up at sil’s as they have a first floor bathroom and we only have one and it’s on the second floor. I’m sure that has to be weighing on her too.

@Stacia I’m sorry about your mom.

Edited February 2, 2022 by saraha

[fairfarmhand]

7 minutes ago, Stacia said:

Not sure if this has been mentioned yet, but do any of their doctors have a social worker who can do a lot of the legwork for your family in re: finding & setting up care (in home or in some type of nursing facility)? Regular doctor, neuro's office, ...?

You have done a lot, but things will only continue to go downhill. It's better to use any help that's available to get stuff set-up (even just some initial evaluations) before things (including your health & sanity) devolve.

My mom is in the end stages of cancer (& we are doing in-home hospice with days, at most, remaining). In the past few months, we have dealt with social workers at the hospital, a rehab center, & through the cancer doctor's practice. While they have all been great, the social worker through the cancer office was the most helpful & assisted us in getting set up with a great hospice company.

(Also, fyi, hospice is not always just end of life. You can start hospice, then opt out, & restart again at a later time if needed. Just ask for help & guidance of professionals. We have found them to be incredibly helpful in navigating the paperwork, costs, coverage, supplies, & actual hands-on help.)

I'm sorry about your mom. BTDT. Big hugs.

[fairfarmhand]

4 minutes ago, saraha said:

I know my sil called our area agency on aging, but felt like she didn’t really get help there. No one has mentioned a social worker although her doctor gave a referral to a home health agency.

Sil must really be feeling it today, she has sent a few texts about them and their care today. To compound her worries, there is an imminent ice storm predicted, with potential wide spread power outages. We have a wood stove as an alternate heat source and they have a propane heater so in laws could go to either place but will probably end up at sil’s as they have a first floor bathroom and we only have one and it’s on the second floor. I’m sure that has to be weighing on her too.

Yeah. That's her mom and dad. And for so long, since you were doing so much, she could stave off the inevitable realization that they were not doing well at all. Likely for the first time, she's seeing things as they truly are. And it's very painful.

[saraha]

Yeah, I’m feeling sorry for her today. Also now worried about impending ice storm and how that may affect dh’s surgery tomorrow 

[prairiewindmomma]

46 minutes ago, saraha said:

Yeah, I’m feeling sorry for her today. Also now worried about impending ice storm and how that may affect dh’s surgery tomorrow 

She needs to feel overwhelmed and uncomfortable about it all because she needs to realize serious change needs to happen. Some people are just that way. I have seen it in my own family dynamics.

Sending well wishes for dh’s remaining good eye. Hope the surgery can happen tomorrow or soon and that it goes well. That is a huge weight on your family in and of itself. Hugs!!

[saraha]

Oh you guys. So sil had sole care of mil this past week as I was recovering from bronchitis. She is doubling down. She just texted she wanted to buy a used hospital bed she saw on Facebook. Dh responded “I figure if mom gets to the point of needing a hospital bed, she’ll probably be needing to be in some kind of care” to which she responded “not if we take care of her at home! So and so told me it was $14000 a month each for her parents in a nursing home.” So itight be coming down to money. 🤦‍♀️Dh and I are not willing to become even half time care givers. So if she decides to become a full time caregiver… oh I foresee so much drama. It may sound callous but if she doesn’t know who any of us are, then what does it matter who is taking care of her? As long as she is getting good care. A nurse from a home health aid place came today and is going to schedule a social worker visit. Right now sil is over there most of every day and I am three evenings a week. If this becomes about money, I’m glad they have already met with an estate planner etc. Dh has said he would never fight with his siblings about money, so that’s good. She is already complaining that their brother is not pulling his weight according to her. I am going to stand my ground about what I am willing to do, but o do t think this is going to be pretty

[prairiewindmomma]

No, it's not going to be pretty.

SIL has unrealistic demands and her plans are only going to work out if everyone caves in to her. Stand your ground about only doing what you are freely willing and able to do.  She's is likely going to deny that things are that bad, or that she is asking too much of you, attack you for being unsupportive, claim that she is a victim for having to do it all, and so on. See her behavior clearly for what it is, and don't let her get your emotions looped into it all. Just see her tantrums as the expected bad behavior from her as she's trying to get what she wants and don't get distracted by it.

Hugs.

ETA: Come up with a standard line and rinse and repeat. I'd probably choose something like, "MIL needs 24 hour full time care, and should be in a home. I don't agree with your decision to try to care for her at home, but I am willing to do xyz as long as MIL is properly cared for at home."

or "This decision shouldn't be about trying to save money. It should be about getting MIL the proper care she needs."

Edited February 7, 2022 by prairiewindmomma

[saraha]

4 minutes ago, prairiewindmomma said:

SIL has unrealistic demands and her plans are only going to work out if everyone caves in to her. Stand your ground about only doing what you are freely willing and able to do.  She's is likely going to deny that things are that bad, or that she is asking too much of you, attack you for being unsupportive, claim that she is a victim for having to do it all, and so on. See her behavior clearly for what it is, and don't let her get your emotions looped into it all. Just see her tantrums as the expected bad behavior from her as she's trying to get what she wants and don't get distracted by it.

Yes, this is exactly what I’m expecting given prior behavior. She is going to be the martyr while her brothers are jerks. She had never texted me at all before in-laws got Covid. Now there are play by play texts ALL day long, in a group text. ALL DAY. She is documenting what she is doing as the day plays out 

[Harriet Vane]

14 minutes ago, prairiewindmomma said:

No, it's not going to be pretty.

SIL has unrealistic demands and her plans are only going to work out if everyone caves in to her. Stand your ground about only doing what you are freely willing and able to do.  She's is likely going to deny that things are that bad, or that she is asking too much of you, attack you for being unsupportive, claim that she is a victim for having to do it all, and so on. See her behavior clearly for what it is, and don't let her get your emotions looped into it all. Just see her tantrums as the expected bad behavior from her as she's trying to get what she wants and don't get distracted by it.

Hugs.

ETA: Come up with a standard line and rinse and repeat. I'd probably choose something like, "MIL needs 24 hour full time care, and should be in a home. I don't agree with your decision to try to care for her at home, but I am willing to do xyz as long as MIL is properly cared for at home."

or "This decision shouldn't be about trying to save money. It should be about getting MIL the proper care she needs."

QFT. 

If there is one thing I have learned from walking the dementia path with my loved ones, it's that they should not be able to dictate while of sound mind what care they receive years later when under the crushing weight of dementia. The evaluations right now need to be based on their condition and on the resources available. And children's childhoods and family livelihoods do matter and must--must--be a part of the equation. 

[prairiewindmomma]

You can do it gently, if you need to. "Oh, I see all of those texts that you're sending about MIL. You are clearly spending so much time over there trying to care for them. She really does need full-time care. I don't see how all of us working together can make this work much longer. I'm not able to do much because the kids and homeschooling keeps me busy. You have your business and I'm sure that your daughter misses you too. I know FIL is afraid of the change, but MIL needs more care than we can provide at home, and I think it's time for you and your brothers to be touring nursing homes."

 

[Arcadia]

1 hour ago, saraha said:

So and so told me it was $14000 a month each for her parents in a nursing home.” So it might be coming down to money.
…

Dh has said he would never fight with his siblings about money, so that’s good.

My husband had to argue with his elder brother about money for their dad’s medical care. His parents have savings but no pension. My FIL needed a PET scan for his cancer and BIL thinks its not essential and was not willing to help pay the $3k out of pocket. Hubby’s sister was willing to pay her share even though she is currently unemployed. FIL had the scan and is now on medication before doing radiation therapy. My annual MRI cost me $989 out of pocket. As I said upthread, have the money budgeting talk with your husband. 

[mlktwins]

I have been dealing with my dad all day and am exhausted.  I will write more tomorrow.

I do want to say you will not want a crap used hospital bed if she is being cared for at home for who knows how long  I will explain tomorrow.

[prairiewindmomma]

Just now, mlktwins said:

I have been dealing with my dad all day and am exhausted.  I will write more tomorrow.

I do want to say you will not want a crap used hospital bed if she is being cared for at home for who knows how long  I will explain tomorrow.

More to the point, if they have insurance, it should fall under durable medical equipment. https://www.medicare.gov/coverage/hospital-beds

 

 

[mlktwins]

Just now, prairiewindmomma said:

More to the point, if they have insurance, it should fall under durable medical equipment. https://www.medicare.gov/coverage/hospital-beds

 

 

It did for my in-laws.  The rentals were crap too!  Hospice got them really nice beds.  Made a big difference to the caregivers!!!

[Spryte]

I only have a moment, but am going to say to start setting boundaries. Big, firm boundaries.

Care costs vary widely. Do the ILs have LTC? That will cover it. Also, it’s possible for one spouse to file for Medicaid, and still protect the other spouse’s assets (to a degree, this depends on the state and you should verify. This is where calling the Agency on Aging can help. That’s a question they can help answer).

And no to a used hospital bed. When and if one is needed, that’s something Medicare may actually cover. But not if she has a used one that may or may not have the options needed. I made the mistake of accepting a used hospital bed, and it is junk. But it’s what we had, so we used it. I would have been better off waiting till a doc said it was a needed expense because it would have been covered, by my mom’s insurance. It’s a thorn in my side now, and still sitting in our guest room. Such a piece of junk, I don’t even want to donate it!

[saraha]

As far as I know they have good insurance, she worked for the public school system for decades and he retired from the power company. But sil has access to all that. I think when they made the estate plan sil was named as poa or potential poa or something 

The nurse that came today from the home health place said she was going to get them a social worker and there is a physical therapist coming tomorrow so some professional people are getting involved so hopefully they will take their advice

Edited February 8, 2022 by saraha

[BusyMom5]

You can call nursing homes around and ask if there are empty beds (there are sometimes long waits if you want a particular place) and how much different places cost.  I would also snoop around and see if you can figure out what medical insurance they have- maybe look through the mail?  If you know their type of insurance, the nursing homes might even be able to tell you the amount after insurance. It sounds like SIL is throwing numbers out,  but hasn't actually called to ask.  You need to get real figures before anyone can make a decision.  Since MIL isn't walking around, she can probably just go in the general population,  and not a dementia unit.  If she will wander off, then she would need to be in a lock down unit for memory care.  The regular nursing home costs less.  Again, SIL is throwing numbers out before even trying to get details.  Those details matter.  Before any of you can have an informed conversation about care, you need more information. 

1.  What type of home should mom be placed in?  What level of care is needed?

2.  Which homes near you offer this level of care? Find out their visitor policies.

3.  Make a list of acceptable places based off 1 and 2, then get insurance info and call each place to see if they have a room available, of you can get put on a wait list, and how much it will be after insurance. 

Once you have all this info, then call a family meeting.

I know sometimes insurance will cover the cost of a caregiver, or z home health nurse to come in a few times a week.  Normally I would suggest that, but it sounds like the situation is long past that.  Private caregivers are great to give family a break, but the 24/7 level of care is just too much.  It isn't right for one person to make all the rules, especially without thoroughly investigating all options.  Often when you are in the middle of a crisis (and it sounds like Covid threw you all into one), its hard to make sound judgements and organize and gather information.   Maybe offer to help gather info?  I'm hoping the social worker and therapist will see the situation from an outside perspective,  and help walk the rest of the family

[Arcadia]

2 hours ago, saraha said:

The nurse that came today from the home health place said she was going to get them a social worker and there is a physical therapist coming tomorrow so some professional people are getting involved so hopefully they will take their advice

 

4 minutes ago, BusyMom5 said:

.  Often when you are in the middle of a crisis (and it sounds like Covid threw you all into one), its hard to make sound judgements and organize and gather information.   Maybe offer to help gather info?  I'm hoping the social worker and therapist will see the situation from an outside perspective,  and help walk the rest of the family

A medical social worker would also likely  have some local contacts and pricing information.  The one I had was also very familiar with insurance plans, financial aid and local support groups. 

[saraha]

Venty vent vent about my sil. I swear all this complaining makes me sound like a bad guy but seriously, she is really starting to tick me off, and I am married to the brother who is not interested in telling her like it is. Grrrrrr. 😖

[Carol in Cal.]

I think that it’s good that SIL is documenting the play by play.  I wouldn’t not feel like I had to answer every text.  That documentation is going to be valuable later as evidence of what is really going on, and that’s immensely helpful to have.

Regarding a nursing home, what you are looking for specifically is memory care, which is a bit different.  Usually around here memory care is offered at assisted living places or stand alone memory care places rather than nursing homes.  And memory care tends to be cheaper than nursing home care, although it varies a lot.  

By the way, the $14,000 per month figure is much lower than the nursing home charges that my mom had last year, which were around $19,500 per month.  

Regarding insurance coverage, it tends to be short and minimal for custodial care, although maybe that is different for dementia—I’m not sure.  Does your state department on aging or insurance department have a Medicare insurance consultation office in each county?  We do here, and they are very good.  That’s where I would start in figuring this out, because it is free and confidential.  Beforehand, check with your family members about what specific insurance your MIL has—Medicare, Medicare supplement (AKA Medigap), Medicare Part D, long term care insurance, life insurance that might have a provision for long term care or for terminal illness care, etc.  That way you can bring that information to the office and they can help you sort through it.

Edited February 11, 2022 by Carol in Cal.

[mlktwins]

14 minutes ago, saraha said:

Venty vent vent about my sil. I swear all this complaining makes me sound like a bad guy but seriously, she is really starting to tick me off, and I am married to the brother who is not interested in telling her like it is. Grrrrrr. 😖

You don’t sound like a bad guy at all - especially to any of us that have lived or are living with this!  Please stand your ground and set strong boundaries.  If your DH won’t do it for you, then you need to!!!  This situation is not going to get better on its current path - I can say that with 100% certainty.  Hang on for a bumpy ride and stand firm in what you will and will not do.  

[saraha]

Oh I set my boundaries, so she texted Dh and bil without me using ridiculously manipulative language and playing the martyr. She doesn’t want to do any care on the weekends, but she is the one with one child at home who is a senior, has a job and drives. Dh and bil both have multiple kids at home and bil only sees his daughter on the weekends. I suggested to dh that he offer to call the lady that comes Tuesday afternoons and see if she would do weekends too. He responded he is praying for wisdom in his response. She is all about the collective we, except 2/3 of the collective we are not onboard.
Bil didn’t respond at all, and I’m afraid that means that Dh will give in and just stay there all weekend. 

[Arcadia]

27 minutes ago, saraha said:

Venty vent vent about my sil. I swear all this complaining makes me sound like a bad guy but seriously, she is really starting to tick me off, and I am married to the brother who is not interested in telling her like it is. Grrrrrr. 😖

 

1 minute ago, saraha said:

. She is all about the collective we, except 2/3 of the collective we are not onboard.
Bil didn’t respond at all, and I’m afraid that means that Dh will give in and just stay there all weekend. 

It took my FIL being diagnosed with prostrate cancer for my husband to stop being mr nice guy. His sister doesn’t “fight back” but ignores his brother when his brother behaves like your SIL. 
 

My husband didn’t want to think his own brother is so “materialistic” and self centered until he can’t deny it anymore. I knew my husband from college so already knew his siblings and their spouses personality.

[Storygirl]

I think that hiring someone for the weekends makes sense and hope that your husband will agree to suggest it.

My other suggestion is that if there are three siblings, a fair choice is to alternate and have one of them be in charge every third weekend.

Since SIL is the one who is determined to continue with home care, she can't pawn off weekend responsibilities entirely. Hopefully the brothers will not cave in to that idea. Whatever your husband agrees to, you can remind him that HE is agreeing to do it, not agreeing for YOU to do it.

[saraha]

I just sent dh this text

I think you and I need to sit down and figure out what we are willing to do and time we are willing to give, that way there is not a "discussion " about it every week. Know what I mean? Then if there are spots she feels needs covered, we can start amassing a cadre of people who can help

he responded yes.
I also suggested that the others do that too then we have a meeting all 6 of us and hammer out a schedule, find the gaps, and hire someone to cover them. He didn’t respond to that for a long time, so I sent another text saying “or just the three of you after getting on the same page as spouses.” And he responded “that’s probably a good idea” which in dh speak means he’s probably not going to do that 🙄

[Carol in Cal.]

8 minutes ago, saraha said:

Oh I set my boundaries, so she texted Dh and bil without me using ridiculously manipulative language and playing the martyr. She doesn’t want to do any care on the weekends, but she is the one with one child at home who is a senior, has a job and drives. Dh and bil both have multiple kids at home and bil only sees his daughter on the weekends. I suggested to dh that he offer to call the lady that comes Tuesday afternoons and see if she would do weekends too. He responded he is praying for wisdom in his response. She is all about the collective we, except 2/3 of the collective we are not onboard.
Bil didn’t respond at all, and I’m afraid that means that Dh will give in and just stay there all weekend. 

If DH takes any weekend time, it shouldn’t be the whole weekend.  Just, like, one afternoon.  Because the first time he does the whole weekend it will become the default.  

Having said that, SIL can just say, I can’t be here this weekend and let the chips fall where they may, in boundary setting fashion.  So it’s better that they are negotiating, I think.  And in general, anyone at any point can take the position that she needs to be in memory care and that they are done otherwise.  It would be smart to be doing some legwork on the memory care availability and quality in town or nearby.  Those places vary a lot.  Also, there might be one that offers respite care, which is less of a commitment than full movement into memory care.  Respite care (in a residential setting)for a month might be just what the family needs to hammer out a plan for the future.

It sounds like SIL’s daughter is in a position to do some weekend care, frankly.

Lastly, something else to look into is whether they have dementia daycare locally.  There are places like that here, and they are great. You bring the person over in the morning, they stay all day, and then get picked up to go home.  In the earlier stages of dementia before folks start wandering around in the middle of the night, these are wonderful

 

[saraha]

8 minutes ago, Storygirl said:

I think that hiring someone for the weekends makes sense and hope that your husband will agree to suggest it.

My other suggestion is that if there are three siblings, a fair choice is to alternate and have one of them be in charge every third weekend.

Since SIL is the one who is determined to continue with home care, she can't pawn off weekend responsibilities entirely. Hopefully the brothers will not cave in to that idea. Whatever your husband agrees to, you can remind him that HE is agreeing to do it, not agreeing for YOU to do it.

I think hiring someone for the weekends makes sense too. The every third weekend thing probably wouldn’t work though because we all have kids that are in all kinds of activities, work, visitation etc and I can see that getting messy quick. dh and I have to go different ways with different kids at at least one point every weekend which wouldn’t work if one of us has to be with mil.

[saraha]

3 minutes ago, Carol in Cal. said:

If DH takes any weekend time, it shouldn’t be the whole weekend.  Just, like, one afternoon.  Because the first time he does the whole weekend it will become the default.  

Having said that, SIL can just say, I can’t be here this weekend and let the chips fall where they may, in boundary setting fashion.  So it’s better that they are negotiating, I think.  And in general, anyone at any point can take the position that she needs to be in memory care and that they are done otherwise.  It would be smart to be doing some legwork on the memory care availability and quality in town or nearby.  Those places vary a lot.  Also, there might be one that offers respite care, which is less of a commitment than full movement into memory care.  Respite care (in a residential setting)for a month might be just what the family needs to hammer out a plan for the future.

It sounds like SIL’s daughter is in a position to do some weekend care, frankly.

Lastly, something else to look into is whether they have dementia daycare locally.  There are places like that here, and they are great. You bring the person over in the morning, they stay all day, and then get picked up to go home.  In the earlier stages of dementia before folks start wandering around in the middle of the night, these are wonderful

 

I’m going to see if I can find some options. We don’t have any memory care locally, we are very rural. I think there might be a senior day care but it closed for Covid maybe? Going to check  it out

[fairfarmhand]

"Sis, my opinion is that we're at the point where we need to extend ourselves beyond in home care by family. We have other options. 1. Full time nursing home care. 2. Hiring people to fill in the gaps where we cannot personally help. My wife and I can do x. You can do y. BIL and his wife can do z. That leaves x hours/days unaccounted for. So how are we going to fill those gaps?" 

The key here is that everyone is honest about their level of committment. And to be willing to just say. "I can't do that." and let others either decide to step up or not. Be willing to just stare her back in the face. 

Also, for us, we had to be very conscious of not judging one another's decisions and limits (beyond being obnoxious or having bad attitudes. I'm talking about in their capabilities and willingness to sacrifice certain things.) . People have differing energy levels, nursing skills, etc. Just because I could do some stuff, didn't mean that my BILs or SILs could do the same. We just had to all be honest about our capabilities and accepting when others had limits that we different from mine. For instance, my SIL had a full time job. I was homeschooling high school aged kids and refused to allow this to interfere with their academics. So we all had to just pull together within the limitations that we had.

[saraha]

https://www.abcap.net/services-for-seniors.html
 

I found this and sent dh a link. I wish sil had included me in their text conversation so that I could drop my ideas and links in personally, but she didn’t. I guess I’ll just save them up til maybe I can use them.

[prairiewindmomma]

You are answering your husband as if sister’s position is logical. It isn’t. 
 

“I understand SIL doesn’t want to put MIL in a nursing home. That’s not wholly her decision to make, and telling us that we have to cover weekends from now until MIL dies is not doable.”

Edited February 11, 2022 by prairiewindmomma

[Jaybee]

I keep wondering if part of the hesitancy for nursing home care is fear of losing the farm due to the costs?

[prairiewindmomma]

1 minute ago, Jaybee said:

I keep wondering if part of the hesitancy for nursing home care is fear of losing the farm due to the costs?

If the farm has been segregated out as a business, it shouldn’t be subject to spend down for nursing home. Neither would the house or a family vehicle.

[Jaybee]

2 minutes ago, prairiewindmomma said:

If the farm has been segregated out as a business, it shouldn’t be subject to spend down for nursing home. Neither would the house or a family vehicle.

Thanks. I didn't think it should be, but don't know the laws related to that kind of thing.

[prairiewindmomma]

Fwiw, I have seen family refuse to put parents into nursing homes because it would spend down the cash parents had set aside for nursing care. They thought they should inherit the cash instead. Their solution was to quit their job and work as an aide and have the parents pay for their help instead. This didn’t go well, fwiw. 

[fairfarmhand]

2 minutes ago, Jaybee said:

I keep wondering if part of the hesitancy for nursing home care is fear of losing the farm due to the costs?

 

Just now, prairiewindmomma said:

If the farm has been segregated out as a business, it shouldn’t be subject to spend down for nursing home. Neither would the house or a family vehicle.

Has anyone asked the questions though? It seems that SIL is going on assumptions and hearsay, which isn't uncommon. Some people, when they get something in their heads, just assume that everything is as dire as they assume and never even explore options and ask questions.

If people could at least discuss, What does nursing home care cost? What will her plan pay? How much is a good in home sitter? What is mom's medical plan? Has anyone met with an eldercare attorney? What assets are protected? Which ones are not? 

I think that OP would be more understanding if cold hard facts were shared that made it clear that nursing home care was 100 percent out of the question over being steamrolled because "I would NEVER put my mother in a nursing home!"  

[saraha]

https://www.abcap.net/services-for-seniors.html
 

I found this and sent dh a link. I wish sil had included me in their text conversation so that I could drop my ideas and links in personally, but she didn’t. I guess I’ll just save them up til maybe I can use them.

I have no idea what sil has researched as far as mil insurance etc. all that was outside my pay grade

[BusyMom5]

I suggested that you start calling nursing homes about levels of care and prices earlier in the thread,  and that is still my first piece of advice.  You guys need hard numbers.  

I'm more assertive, I'd probably just go directly to SIL when it comes to caring for MIL.  I've been married over 20 years, my MIL is very close to us!  We live on the family farm and see her all the time.  I would be very hurt if I was shut out of conversation about her care- especially if they still wanted me to help!  Tell her what you can do, don't put it on your DH bc it sounds like he doesn't like to argue.  Tell her to stop bothering him while he's working and communicate with YOU about that she wants YOU to do.  

Most of this advice has been on regard to caring for MIL, but there is another half to this picture- the Farm!  The brothers need to confer and decide how to run the farm,  since they are doing all the work on that end. Since I don't know how its set up, I can't offer advice.   I can say that brothers get mad when they both work the farm and then after Dad dies, it's split 3 ways and they have to buy out sisters third.... that they have been working on while she doesn't even live there. With no compensation for the years they worked that she didn't.  It breeds a lot of resentment. I don't see all 3 running it together working out.  Maybe the 2 Brothers buy sisters part out?  Or one brother decides to buy both out?  Whatever the case may be, I think it needs decided on soon.  Its not fair if your DH is doing most of the work and not being paid for it. (Obviously I do not know the exact circumstances,  but we are the 3rd generation to own our farm, and I've watched other families go through this)   

I will be praying for patience and understanding. I think they are all grieving, and all handling it in different ways.  

[saraha]

I am also feeling like this is going to be hard on dh and my relationship. I have 20 years of history of being told and I’m afraid he is just going to go along with that, and that makes me sad and opens up old hurts. So I think that is an underlying factor in my quick temper about it all 

[Katy]

I apologize if this is harsh. I’m sleep deprived and starting to get depressed from being stuck in this house with little hope of leaving for the foreseeable future so I don’t feel like I have a good grasp on subtlety at the moment. But I think I’d say something like,  “I’m done. It is past time to call the family lawyer and put them both in a home. We can’t medically neglect them both in the name of saving money. Realistically there will be a tragedy or a fall or one of them is going to wander off. If they live though it there’s no way a hospital would release them to come home. They need 24 hour care and we cannot provide it.”

It will help if you’ve already looked at adult day care and nursing homes in the area and evaluated costs. But it’s okay to just disengage when you’re both being shut out AND you know this is wrong. 

[saraha]

9 minutes ago, BusyMom5 said:

I suggested that you start calling nursing homes about levels of care and prices earlier in the thread,  and that is still my first piece of advice.  You guys need hard numbers.  

I'm more assertive, I'd probably just go directly to SIL when it comes to caring for MIL.  I've been married over 20 years, my MIL is very close to us!  We live on the family farm and see her all the time.  I would be very hurt if I was shut out of conversation about her care- especially if they still wanted me to help!  Tell her what you can do, don't put it on your DH bc it sounds like he doesn't like to argue.  Tell her to stop bothering him while he's working and communicate with YOU about that she wants YOU to do.  

Most of this advice has been on regard to caring for MIL, but there is another half to this picture- the Farm!  The brothers need to confer and decide how to run the farm,  since they are doing all the work on that end. Since I don't know how its set up, I can't offer advice.   I can say that brothers get mad when they both work the farm and then after Dad dies, it's split 3 ways and they have to buy out sisters third.... that they have been working on while she doesn't even live there. With no compensation for the years they worked that she didn't.  It breeds a lot of resentment. I don't see all 3 running it together working out.  Maybe the 2 Brothers buy sisters part out?  Or one brother decides to buy both out?  Whatever the case may be, I think it needs decided on soon.  Its not fair if your DH is doing most of the work and not being paid for it. (Obviously I do not know the exact circumstances,  but we are the 3rd generation to own our farm, and I've watched other families go through this)   

I will be praying for patience and understanding. I think they are all grieving, and all handling it in different ways.  

Apparently it’s a secret from me how it’s all done. Dh won’t talk about it, but I’ve seen mail addressed to xxx family trust so I have no idea. Dh has a lot on his plate, just like everyone else, and just does not want to engage with me or sil on this. I feel so helpless and out of the loop, and he would get his back up if I tried to go around him. It is all so hard and it’s never ending. The texting, the scheduling, the thinking about it.