Feeling Frustrated about MIL care and family members and need perspective

[FaithManor]

Three times in the past two weeks my dad has been hospitalized for psychotic breaks. My sister is bizarrely unrealistic about the ability to take care of him in the home. She is demanding an untenable 24/7 care plan of my brother and I despite the fact my brother is losing his house, looking for a new job, still has a child to raise, I am homeschooling...we are not agreeing to it. Dad will have to a facility. I am not certain he can even be safely kept at home with mom anyway. My sister leaves to go back to France next week and she is pretty hateful to me so I predict when this is over she wil cut me off. I don't want that to happen, but I also cannot control her actions. So I can only hold my ground on behalf od my family, not taking on more than we can reasonably manage, and let it go. This my recommendation for you Quill. If there is mental illness/dementia involved, my experience has been few outings, routine, and limiting surprises is better anyway.

[LucyStoner]

One sibling is Executor of will and manages the finances. The sibling who lives in another state has medical POA, I believe.

 

Love the drinking game idea, LOL!

.

 

As things progress, the medical POA probably needs to be someone local. I was making medical decisions for my mom every few days for a long time. I don't see how that can be done from a great distance.

[Carol in Cal.]

It's not that I mind doing things with MIL. I would totally do that anyway. It's two things: 1. I'm not bowing to Jill's command, KWIM? I'm not doing anything *because* Jill said to do so. (DH is not the only stubborn one here.) Also, 2. I don't want to interact with Jill when I can possibly avoid it. So, I'm not keen to tell her, text her, whatever, to arrange something. For some things, it wouldn't be a big deal, no. If we're going to the park, I *could* send Jill a text and say, "We're going to the park today and could come pick up mom around 12:00." For example. I would do that. But I am not going to bring over a lunch, say, because that has to be arranged and that means I have to call Jill and arrange it.  :ack2: 

 

Lastly, I am a phone-a-phobic, so trying to get me to call anyone is a non-starter. I am not going to call MIL just because Jill says I should. 

 

If you don't want to deal directly with Jill ongoing, there are a couple of ways to accomplish that:

1.  You could commit to a schedule and not reply if she tries to discuss it, just point back to it a few times.  She will get the idea.

2.  You could throw everything in this situation back on your DH, including the 'extra' visits.  Then you'd be out of the loop but you also would not be committed to anything in particular.  This will only work if you're clear with DH that he can't commit you without checking in with you first, but at least you'll only be talking to him.

 

 

Stepping back for a moment to survey the situation as a whole, I agree with you that MIL should be in her own home.  Maybe caring for her is too much for the auntie; in fact, it almost certainly is, but you all could support her in that, or you could get her some rest by handling this that way.

 

If I were you, given that MIL can't live safely in your home (read that over again please--she can't live safely in your home!), I would simply move her into her own home and take turns sleeping there with her while it's your turn.  You are so fortunate to have that option, and I would use it if I were you. 

 

There are different kinds of memory, short term, long term, and physical.  Dementia starts by attacking short term memory, and the most comfortable way to care for someone with that is to make sure that they are in a familiar environment that meshes with their physical and long term memory.  MIL will deteriorate much faster if she is moved around a lot.  You might not be able to prevent that completely, but you can prevent that on your watch, and I would accept no argument not to do so.  It's by far the kindest, safest, healthiest, and most respectful thing you could possibly do for her.

[prairiewindmomma]

Prior to this year, she was living at her home with weekly rotating coverage and her sister (DH's aunt) living there. I thought this was optimal. The aunt is a good bit younger and of sound mind. She doesn't really have another "home." So the cousins are passing the aunt around and we're passing MIL around, but IMO, it would be a win-win to have MIL and aunt living at MIL's home, with assistance from us and, in the future, paid help as well.

 

The four "dominant" sibs rejected this idea when MIL had a mini-stroke. Auntie makes "farm food" and cannot/will not make different kinds of food for MIL to eat. Also Auntie does not "make" MIL do anything, so MIL sits on the counch and watches Fox News. there are some other aspects to it, but that's the main gist.

 

When we were first doing the rotating weekly assistance thing, I tried to get a Sign Up Genius thing going. There is already a weekly rotating schedule for mowing at MIL's farm and that could be on Sign up, as well as library books, outings, whatever. That was my vision, LOL! But it didn't take. The eldest sibs I think were just too unfamiliar with it and/or they didn't want that formal of a schedule maybe? I'm not sure, but it was one suggestion that never happened.

 

IME, denial or misunderstandings about dementia played a huge factor into some of the craziness that has gone on with elder care in my family.  The biggest squawker and trouble maker among the siblings has also been the one most in denial about natural decline in the parent and the one least likely to actually step in and do the less pleasant parts of active caring.

[fairfarmhand]

Skim the emails to make  sure there's nothing crucial that you're missing and hit delete.

 

Then do whatever you were going to do anyway.

 

Don't plan anything that requires coordination with Jill. IOW text her "Hoping to take mom out Friday afternoon/evening. I'll take care of dinner for her and bring her back at 7:30. Let me know if there is a conflict" You don't have to tell her what you plan to do for the time that you have her. Just give SIL the basic plan.

 

If you're not a "caller" then don't worry about calling. I'm not either. I might, however, pop a card in the mail to mom on a weekly basis so she can see that you're thinking about her.

 

BTW, I wouldn't tell other people what you have planned for your time of caregiving. You're going to do it your way so just do it. Don't ask for their permission.

[LucyStoner]

What was the moving her every 3 months decision driven by? It seems like an exceedingly poor choice.

 

That said, three months of 24-7 caregiving is hard and will, as time goes by get harder. The idea of giving the primary caregiver a weekly respite is not actually a bad idea. Caregiver burnout is a real thing and having a morning off weekly could make or break the situation. Still it would be better if Jill framed it like that rather than as fun outing for your MIL.

 

Honestly, I don't think I would stay in the 3 month rotation. Partly because you aren't set up for it/no bedroom on the main floor and partly because home care would be better for her. Perhaps if faced with a 4 month rotation the other 3 local couples would consent to caring for her in her home using a mix of family and paid caregivers.

 

If they persist in the moving her all the time thing, you and your husband could offer to provide respite 2-3x a week year round.

 

If staying in her own home is impossible, moving her to one of the sibling's homes (providing paid and family respite and using estate funds to make the home accessible) or to a care facility would be kinder than passing her around like a hot potato.

[LucyStoner]

I agree. In January, they had a meeting and it was *clearly* intended to be for the siblings ONLY, in part to keep the iLs from being one more chattering voice in the room. It is hard enough to get six people to agree, much less 12. ONE SIL came to this meeting, though! Fortunately, words were not minced and the sibs told her the meeting was meant for the sibs, not the spouses and she was welcome to watch TV in the other room. :D

Here's the thing though. I'm assuming that most probably the (female) ILs are providing most of the actual day to day care on their husband's 3 month shift and the added work of bringing MIL into their homes. That's most commonly how this plays out. It's actually not a great idea to exclude those who will be doing the caregiving from the decision making process.

 

Are you and Jill the only DILs? Or are there others?

 

If my husband's family thought I would take on elder care for them and then told me I was unwelcome in planning that care? I'd be unamused. And while not inclined to make any elderly family member suffer by just dropping out, I would be providing only what I could and not cowtowing to what the siblings wanted.

Edited June 28, 2016 by LucyStoner

[Lanny]

OP I read all of post #1.  You are correct to feel the way you do.  Direct their emails and text messages to SPAM and delete them, without reading them.  

[PrincessMommy]

If Jill wants MIL to have outings while staying with them, I think that's pretty much up to her household to handle.

.

If I HAD to debate it with Jill, I am wondering: does Jill want EACH sibling's family to take MIL once a week, so MIL has an outing almost every day, or does she want there to be one weekly outing, handled by a different sibling family each week, so each sibling would do this once per month?

 

I would recommend your husband saying exactly this to Jill or, better yet, his brother Jack.   I agree that it's best to stay out as much as possible since it isn't your mom (I'm in a very similar situation. I know what that's like ).  But, I agree that if Jill thinks this is important then, by all means, *she* go do that.  Just don't ask everyone else to agree.  Maybe your husband can talk with his brother privately about it and not via email?

 

I doubt you're the only in-law feeling like this either.  But sometimes speaking up publicly creates more drama than is necessary.

[Tammyla]

Op has the rotating living situation been discussed with her doctor?  

 

I imagine that over time this will become harder and harder on someone her (mil's) age with dementia and of course that goes for those caring for her.  Your sil, may be overwhelmed or just a pill, but caring for someone 24/7 can be extreemly draining and so much more than others can imagine; honestly some people just can not and should not do it.  She may need a break or even an out to ensure your mil is cared for in a safe and loving environment.

 

In dealing with sil, I get the feeling that ignoring her isn't an option you are comfortable with.  Work on a non-committed responses like...  I'll think about it or sorry,  that doesn't work for me/us etc.  Fwiw, I loathe working with pushy people and try not to feel guilty for not doing or wanting to do what they want.  

 

Your dh would be a good point man on dealing with all things mil related, but you have to be willing to let things slide if he doesn't do things your nicer way. Kwim?.

Edited June 28, 2016 by Tammyla

[Guest]

The more I think about this, the more I dislike it. This poor old lady is getting shuffled around like the unwanted country cousin. She deserves the dignity of a real home, a bed she can call her own. Putting her in a retirement facility would be the kind thing to do.

[Guest]

A mediator needs to get involved as the little old lady (judging my my own dad) is only going to get worse, memory-wise, and it is better for her to enter a facility NOW, while she can adjust, than later, when it will be harder on her. I imagine moving from house to house will be increasingly hard on her, too. The current situation makes the kids feel better ("we didn't stick Mom in a home or let her sit in from the Fox News all day like her sister did") but it may not be in your MIL's best interests for this to continue. My dad, after he broke his hip, was in rehab several weeks. I was out to visit and help care for him when he was able to go home - I recall the social worker at the rehab place pushed for me to find a decent facility to move Dad into instead of going home again, since the facility is inevitable, and he would adjust far better going from rehab to the facility than home first and then moving to the facility months or a year or so later. Dad's long-time girlfriend (he and mom are divorced, neither will remarry though as then Mom and Dad's girlfriend lose their alimony from their former spouses. But each is as good as married, for all intents and purposes, to the "girlfriend/boyfriend") just couldn't "do that" to Dad (yet) so he came home. In retrospect, the social worker was right. Dad is worse now, and it is going to be a lot harder getting him to adjust to moving into a safer place now :-(

No one should offer respite to the person currently in charge of your MIL. Maybe them getting stressed will make them come around to seeing that little old lady needs to be either with a caretaker in her own home or in a facility - with frequent visits from her kids etc.

 

Some of the places I visited as possible placements for Dad (eventually) had tiers - retired folks had their own little apartments, and could microwave food in their room (no stove/ovens) or go to the dining hall for meals. There were heaps of activities and they could come and go as they pleased. Then there was another tier, with more nursing care but still in their own small apartment or room (depending on $$$) and supervised transportation if driving no longer safe. Final tier more of a secure ward for folks with dementia who might wander etc. It was a separate section of the facility, with its own smaller dining hall, rec room, etc. IF a person was able to ask to go out to the larger facility, if they knew to say "It is time for the Thursday poker game in the lounge", then they could be allowed to leave the ward to go to the event. BUT they could not leave the building without an alarm, so if they did get lost, it was just in the facility. Does this make sense?

Yeah. One of MIL's long-time friends is at an assisted-living facility with multiple tiers. I think it would be awesome for both mom and dear old friend if they were there together. OR if mom lived at her home with auntie and a Visiting Angel type caregiver could come. MIL has substantial amounts of $$$, although I am aware these places are not chump change. But to me, paid care would be great for everyone, and could take place at home if everyone prefers.

 

I would make more of a statement about this if it were MY mom, but I'm not about to try and push through what the kids want to do; it's not my call to makr.

[FaithManor]

Since my husband works long hours, any sibling meeting about "who is taking care of mil" would not be happening without me unless it is with the understanding that if I have no say in the decisions and the schedule, I will also not be participating in care giving. That is an easy way for everyone to pawn off the workload on someone else.

 

With dh's grandmother, what the sibs found was that though grandma went six months at a time to each child, she still handled the moving and travel very poorly, and each time it happened, it took her longer to settle down. She could not handle the young children in the family, pets, unexpected people at the door, etc. When they all agreed to put her in an Alzheimer's facility, she did a LOT better. Some sibs couldn't come to see her much due to distande, but that didn't matter as she did not remember visitors or the time between them. She ate better, slept better, and was more content, less upset or angered.

[Tita Gidge]

What was the moving her every 3 months decision driven by? It seems like an exceedingly poor choice.

 

 

I'm guessing it was driven by two things: inexperience/ignorance on caring for someone with dementia and personal convenience (possibly with some family culture thrown in).

 

I feel for Quill because it seems she and her husband acknowledge what so many here are saying about the rotation, they're just unfortunately in the great minority. Five siblings, and four of them agree to this arrangement. Short of offering to take on full responsibility for MIL, I'm not sure what else Quill & Co. can do. :sad:

 

It's hard to reconcile personal (or family) philosophy with the reality of a loved one's situation. It's even harder to do as a sibling, much less as a sibling group. This is one of those situations where you don't really get a do-over, so the stakes feel high to everyone. With no single couple (ha, that sounds funny) in a position to take full responsibility for MIL's care, the minority group has to roll with the tide to keep the peace or risk bearing the burden of full-time care themselves.

 

We make a lot of decisions for our family as siblings only. But it's expected that each sibling will come to the table knowing what his or her relationship can handle (and is willing to handle). It never occurred to me that my SILs might pick up the "daughter" role in caring for the elderly. Mostly because I'm a daughter LOL.  But also because my brothers are actually very active in caring for our elderly; their wives help, but I wouldn't say they do the brunt of the work. I guess it helps that we all live close and can delegate to another sibling before burdening a spouse. But I do now have a fresh perspective on why it can be important to include in laws in these types of conversations, thanks to posters to this thread.

 

I'm still in favor of a siblings-only conversation to find out what page everyone is on, and then inviting in-laws to join the discussion where specifics are hammered out. In my mind, the children make the call and any burden that might fall unjustly onto an in-laws is a problem that needs to be addressed at the couple level rather than at the (extended) family level.

[Guest]

Op has the rotating living situation been discussed with her doctor?

 

I imagine that over time this will become harder and harder on someone her (mil's) age with dementia and of course that goes for those caring for her. Your sil, may be overwhelmed or just a pill, but caring for someone 24/7 can be extreemly draining and so much more than others can imagine; honestly some people just can not and should not do it. She may need a break or even an out to ensure your mil is cared for in a safe and loving environment.

 

In dealing with sil, I get the feeling that ignoring her isn't an option you are comfortable with. Work on a non-committed responses like... I'll think about it or sorry, that doesn't work for me/us etc. Fwiw, I loathe working with pushy people and try not to feel guilty for not doing or wanting to do what they want.

 

Your dh would be a good point man on dealing with all things mil related, but you have to willing to let things slide if he doesn't do things your nicer way. Kwim?.

I can and do ignore her to a point. It's only when she fishes for feedback that I start feeling like something must be said if I am not favorably disposed to whatever she is saying. There is one sibling and wife who almost never give feedback at all, and that is not good, either. This one sib never said whether he agreed or disagreed with the 3-month rotation and he has said nothing, nothing, nothing over the past months that this has been going on in emails and since the meeting. But now, he finally did make a snide comment and said he would do the rotation when it came to his time. This is worse; he has been frustrating everyone for six months by not saying anything about what he does or does not want to do or think is good. So I wouldnt want to take ignoring THAT far.

 

But I mostly let DH be the spokesperson regarding her care. That is fine with me.

[Anne]

 

 

If I were you, given that MIL can't live safely in your home (read that over again please--she can't live safely in your home!), I would simply move her into her own home and take turns sleeping there with her while it's your turn.  You are so fortunate to have that option, and I would use it if I were you. 

 

There are different kinds of memory, short term, long term, and physical.  Dementia starts by attacking short term memory, and the most comfortable way to care for someone with that is to make sure that they are in a familiar environment that meshes with their physical and long term memory.  MIL will deteriorate much faster if she is moved around a lot.  You might not be able to prevent that completely, but you can prevent that on your watch, and I would accept no argument not to do so.  It's by far the kindest, safest, healthiest, and most respectful thing you could possibly do for her.

 

I would totally do this on my watch if I were you!!!  Regardless of what the other sibs do or do not want - they must understand that your mil would not be safe in your home and that you could care for her MUCH better in her own home.

 

((Quill))

 

Your mil is a fortunate woman to have all this care!

 

Anne

[PeppermintPattie]

It's not that I mind doing things with MIL. I would totally do that anyway. It's two things: 1. I'm not bowing to Jill's command, KWIM? I'm not doing anything *because* Jill said to do so. (DH is not the only stubborn one here.) Also, 2. I don't want to interact with Jill when I can possibly avoid it. So, I'm not keen to tell her, text her, whatever, to arrange something. For some things, it wouldn't be a big deal, no. If we're going to the park, I *could* send Jill a text and say, "We're going to the park today and could come pick up mom around 12:00." For example. I would do that. But I am not going to bring over a lunch, say, because that has to be arranged and that means I have to call Jill and arrange it.  :ack2: 

 

Lastly, I am a phone-a-phobic, so trying to get me to call anyone is a non-starter. I am not going to call MIL just because Jill says I should. 

 

It sounds like this is becoming more about Jill than MIL. She deserves to see all her children regularly, doesn't she, and not just during each child's three-month rotation? I think Jill is right in suggesting outings or visits from family members as it is in your MIL best interest to have lots of family interaction.

 

Jill's tactics may be off-putting, but it doesn't mean she's wrong. Her three months will be over soon enough, but the one who will be hurt by all this is your MIL.

[JFSinIL]

Quill, either push your hubby to "make a statement"  or point out that you have a statement, and are more of an "objective observer" since it isn't your mom.  Someone has to speak up for that poor little old lady.  Her kids have good intentions, but it does not sound in her best interest to be shuttled around every three months.  It may make her sink faster into dementia :-(

[Seasider]

BTW, I wouldn't tell other people what you have planned for your time of caregiving. You're going to do it your way so just do it. Don't ask for their permission.

I agree. But I would hope that the end goal would be to restore her to her own home, or to managed care at the proper point.

[LucyStoner]

It never occurred to me that my SILs might pick up the "daughter" role in caring for the elderly. Mostly because I'm a daughter LOL. But also because my brothers are actually very active in caring for our elderly; their wives help, but I wouldn't say they do the brunt of the work. I guess it helps that we all live close and can delegate to another sibling before burdening a spouse. But I do now have a fresh perspective on why it can be important to include in laws in these types of conversations, thanks to posters to this thread.

 

 

That is great that your brothers are very involved with caring for elders.

 

Women are far more likely to perform larger shares of any type of family caregiving in the US. That your brothers are very active in caregiving is great but that isn't an automatic thing.

 

On average in the US family caregivers caring for elderly people are women in their late 40s or 50s who are initially employed outside of the home as well. Roughly 1/3 of women who take on such a role in their families reduce their paid working hours and eventually just under 1/3 retire early or quit their jobs to see to caregiving needs. This has long term financial consequences for many women who then acrue less retirement benefits. Caregivers are also at a higher risk for certain health conditions of their own.

 

Eldercare has so many considerations and gender roles and norms are a consideration for me in who, biologically related or not, many need a voice in how to do what must be done.

[Guest]

A mediator needs to get involved as the little old lady (judging my my own dad) is only going to get worse, memory-wise, and it is better for her to enter a facility NOW,

 

SNIP

 

I recall the social worker at the rehab place pushed for me to find a decent facility to move Dad into instead of going home again, since the facility is inevitable, and he would adjust far better going from rehab to the facility than home first and then moving to the facility months or a year or so later. Dad's long-time girlfriend (he and mom are divorced, neither will remarry though as then Mom and Dad's girlfriend lose their alimony from their former spouses. But each is as good as married, for all intents and purposes, to the "girlfriend/boyfriend") just couldn't "do that" to Dad (yet) so he came home. In retrospect, the social worker was right. Dad is worse now, and it is going to be a lot harder getting him to adjust to moving into a safer place now :-(

 

No one should offer respite to the person currently in charge of your MIL. Maybe them getting stressed will make them come around to seeing that little old lady needs to be either with a caretaker in her own home or in a facility - with frequent visits from her kids etc.

 

SNIP

 

One of the things we were told/read about when my FIL was descending into dementia was that the very act of moving often causes an acceleration of decline.  But they had made up their minds, so they moved from one coast to another...and sure enough...things got markedly worse almost immediately.  Familiarity of surroundings and feelings of security and permanence are great helps to those who are losing their grasp.  In my mind, the three month rotation to new locations is a recipe for making things worse.  

 

Eventually, my FIL, who had to enter a facility for those who required memory care, had to be in a specific ROOM at a certain time of day, or he would become agitated.  

 

I'm with you, Quill, on this...whether in her own home or in an assisted living place, the decision to stabilize her location should be taken sooner than later.  I  wish I could remember where I learned of this pattern so I could tell you the reference.  We had so much to research all at once that it is a blur.  I do recommend Being Mortal, as well.  

 

I'm not the world's expert on dementia; for that reason, we tried hard to listen to what doctors and social workers told us, and we are glad we did...the patterns certainly played out as they said they would.  Unfortunately, we were not the decision-makers for a long time; had we been so, we would have done all we could to prevent the coast-to-coast move.  

[zoobie]

I'm guessing it was driven by two things: inexperience/ignorance on caring for someone with dementia and personal convenience (possibly with some family culture thrown in).

 

I feel for Quill because it seems she and her husband acknowledge what so many here are saying about the rotation, they're just unfortunately in the great minority. Five siblings, and four of them agree to this arrangement. Short of offering to take on full responsibility for MIL, I'm not sure what else Quill & Co. can do. :sad:

 

It's hard to reconcile personal (or family) philosophy with the reality of a loved one's situation. It's even harder to do as a sibling, much less as a sibling group. This is one of those situations where you don't really get a do-over, so the stakes feel high to everyone. With no single couple (ha, that sounds funny) in a position to take full responsibility for MIL's care, the minority group has to roll with the tide to keep the peace or risk bearing the burden of full-time care themselves.

 

We make a lot of decisions for our family as siblings only. But it's expected that each sibling will come to the table knowing what his or her relationship can handle (and is willing to handle). It never occurred to me that my SILs might pick up the "daughter" role in caring for the elderly. Mostly because I'm a daughter LOL. But also because my brothers are actually very active in caring for our elderly; their wives help, but I wouldn't say they do the brunt of the work. I guess it helps that we all live close and can delegate to another sibling before burdening a spouse. But I do now have a fresh perspective on why it can be important to include in laws in these types of conversations, thanks to posters to this thread.

 

I'm still in favor of a siblings-only conversation to find out what page everyone is on, and then inviting in-laws to join the discussion where specifics are hammered out. In my mind, the children make the call and any burden that might fall unjustly onto an in-laws is a problem that needs to be addressed at the couple level rather than at the (extended) family level.

Once the MIL gets to a certain point with dementia, she won't be able to be left alone at all. That impacts the stay-at-home spouse the most (Quill, in this case). My stepmother can't go to the bathroom without worrying her mother will get up and fall. She can't run to the grocery store or make a last minute appointment for herself. Grandmother isn't easily (relatively speaking, lol) portable like a toddler. She's usually combative and will refuse to get out/in the car despite barely being able to stand. Even if the person can be left alone, there's extra laundry, shopping, and cooking. Incontinence issues mean lots of laundry daily. Helping in the bathroom and hygiene likely would fall on Quill as well. Managing medications. Doctor's appointments. Basically, whomever runs the household needs to be considered and consulted when you're volunteering them to care for a dependent person full time for any length of time.

[SebastianCat]

We have just gone through this with DH's parents.  FIL passed away two weeks ago, and MIL passed away ten months ago.   For many years, they compensated for each other - MIL had a chronic lung disease but a sharp mind, and FIL had dementia but a strong body.   Their conditions deteriorated very slowly until they got a point where they were missing medications, couldn't prepare meals, and were becoming a danger to themselves.   Moving them into an ALF (because previously they were 4+ hours away from their closest children) was the best decision, even though it was very difficult for them.

 

I highly recommend the book The 36 Hour Day and would, in your case, think about buying either one copy that you shared among siblings, or buying a copy for each sibling.   The book has anecdotes written from the perspective of a dementia patient so you can better understand how the changes in environment impact your MIL.    It also will help you look toward the future and what to expect as the dementia progresses, so you can be proactive with decisions instead of reacting to emergencies as they arise.   I would hope that the book would be eye-opening to the siblings insisting on the 3-month rotation, because although it might seem to be FAIR to split time among the siblings, it's probably the hardest living arrangement on your MIL.   Living in a facility where she has a simple, safe, familiar environment with the appropriate level of mental stimulation and predictable activities is probably the best thing for her.

 

I also recommend that you hire a local geriatric care manager to do an evaluation and make recommendations about your MIL's care.   An objective evaluation from an expert in geriatric care or dementia care would probably go a long way in helping your MIL and your DH's siblings decide on the best arrangements.   They could probably also help you find additional help, whether that's home health care, daycare, or moving her to a facility.   An objective evaluation of homes may be necessary before your DH's siblings will accept the fact that your home in particular isn't safe.

 

We also found that with DH and his siblings, texts and emails were the absolute WORST way to communicate.   MIL and FIL moved to an ALF where SIL lived, and SIL frequently sent emails or texts in the middle of the night, which DH and his brother never saw until the following morning.   Emotions ran high in the middle of the night, things were misinterpreted the next morning, and very few decisions were ever made via text or email.   Phone calls or in-person meetings (even though DH lived 6 hours away from SIL and DH's brother lived 9 hours away) were very productive.   So at a minimum, a conference call with all of the siblings (and spouses who are doing any caregiving) would be a good idea at least a couple times per year.   Better would be an in-person meeting.

[Seasider]

Once the MIL gets to a certain point with dementia, she won't be able to be left alone at all. That impacts the stay-at-home spouse the most (Quill, in this case). My stepmother can't go to the bathroom without worrying her mother will get up and fall. She can't run to the grocery store or make a last minute appointment for herself. Grandmother isn't easily (relatively speaking, lol) portable like a toddler. She's usually combative and will refuse to get out/in the car despite barely being able to stand. Even if the person can be left alone, there's extra laundry, shopping, and cooking. Incontinence issues mean lots of laundry daily. Helping in the bathroom and hygiene likely would fall on Quill as well. Managing medications. Doctor's appointments. Basically, whomever runs the household needs to be considered and consulted when you're volunteering them to care for a dependent person full time for any length of time.

Very valid points. A full time caregiver must fill all these roles...

 

Mobility aide

Chauffeur

Physician liaison

Laundress

Cook (includes meal planning, serving and cleanup)

General Housekeeper

Medication administrator

First responder/first aid attendant

Bathing assistant

Toileting assistant

Social companion

Night watchman for patient who wakes and roams

 

And who is out refilling prescriptions and buying groceries when an elder with dementia cannot be left unattended?

 

Consider how many paid professional staff members it takes to provide these services in managed care. It is impossible for one person to do all this well for more than a few days at a time. Quill, I don't wonder that your SIL is imploding.

 

Something I wonder about is, what about liability? What happens if an exhausted caregiver makes a mistake doling out daily meds? Or after a week of sleepless nights, falls asleep just long enough for the insomulent elder to have a deadly accident? The other thread about sibling relationships in eldercare is telling - would a disgruntled sibling actually press charges? I know of one family caregiver who was investigated for elder abuse due to a call by a family member who was disagreeable and had no valid claim, but just wanted to cause trouble.

 

The world would be a wonderful place if every senior could peacefully age in place, but it is much, much harder to accomplish than it sounds, especially with difficult extended family and lack of adequate financial planning for retirement.

[Guest]

I think The 36-Hour Day was the book that gave us so much help as re: understanding progression and needs.  

 

[FaithManor]

Very valid points. A full time caregiver must fill all these roles...

 

Mobility aide

Chauffeur

Physician liaison

Laundress

Cook (includes meal planning, serving and cleanup)

General Housekeeper

Medication administrator

First responder/first aid attendant

Bathing assistant

Toileting assistant

Social companion

Night watchman for patient who wakes and roams

 

And who is out refilling prescriptions and buying groceries when an elder with dementia cannot be left unattended?

 

Consider how many paid professional staff members it takes to provide these services in managed care. It is impossible for one person to do all this well for more than a few days at a time. Quill, I don't wonder that your SIL is imploding.

 

Something I wonder about is, what about liability? What happens if an exhausted caregiver makes a mistake doling out daily meds? Or after a week of sleepless nights, falls asleep just long enough for the insomulent elder to have a deadly accident? The other thread about sibling relationships in eldercare is telling - would a disgruntled sibling actually press charges? I know of one family caregiver who was investigated for elder abuse due to a call by a family member who was disagreeable and had no valid claim, but just wanted to cause trouble.

 

The world would be a wonderful place if every senior could peacefully age in place, but it is much, much harder to accomplish than it sounds, especially with difficult extended family and lack of adequate financial planning for retirement.

Exactly. Many people harken back to the "good ole days" when grandma was taken care of at home until grandma died. But here's the deal. Grandma, if she couldn't take care of herself died pretty darn quickly and often times alone unless the family was well enough off to have servants. The living had to make a living, tend the garden, keep the fires burning, earn wages, care for young, and a myriad of other tasks that could not be set aside because an elderly person moved in. Medical advances mean people are living many years longer after becoming unable to care for themselves. This puts extraordinary stress on the sandwich generation, and many times the hardship is very great.

 

We have to be realistic.

[Guest]

Tangent: this was a fortunate coincidence. I was at the house today; my boys were going to swim, and one of the SIL's (actual daughter) was at the pool with her son. Conversation did come around to this email discussion. This SIL is the one who just recently finished a rotation. We had a very good conversation. She has not responded with anything in the email and told me she was just holding her tongue at the moment and is very annoyed with Jill. This SIL feels that Jill is sort of harping on everyone to do things the way she wants.

 

OTOH, it was very balanced, because this SIL was saying it is very nice if/when anyone can come do something with mom and it does perk her up to get a phone call. She also said she thought Jack was being hypocritical because he did not call or do one thing the whole time Mom was staying with this daughter, but now that mom is with him, he is brow-beating everyone to involve themselves. She also said she thinks it's different and harder in some ways for the DILs; she recognizes that this is not my mother and it isn't the DILs place to jump in and do everything.

 

I'm just really glad this conversation happened. No, it doesn't mean every problem is solved, but it's nice to know that I am not the only one who thinks Jill's wishes were not expressed very well and that I wasn't the only one irritated by it.

[Seasider]

I think The 36-Hour Day was the book that gave us so much help as re: understanding progression and needs.

Yes but like I told my cousin who recommended it to me....I'd need a 37th hour in which to read it!

[Cinder]

:grouphug:   No advice, just hugs as dh and his sibs are entering into the eldercare arena. It's just a hard place to be for all involved.  :grouphug:

[Plink]

Elder care is hard.  Elder care in rotation sounds like a horrible combination and is naive at best.  Poor mom has to throw her schedule to the wind every three months (without dementia this is awful).  Families have to change their routines regularly.  Everyone feels they have a right to say how Mom is to be taken care of at every turn, and complain when their well thought through plan is implemented less than perfectly 3/4 of the year.  Gah!  No wonder you are starting to get on one another's nerves

 

I loved taking care of an aging family member in our home, but it was not easy.  I can't imagine how much harder it would be if I had to go through that adjustment period over and over again.

 

I'm glad you are talking with your SIL.  Keep those communication lines open.  I have a feeling that this plan is going to need a lot of honest conversations if it is to work.  Everyone has to be truthful about their expectations, struggles, and willingness to help, or you will destroy this family.  That would be so very sad for mom.  

Edited June 29, 2016 by Plink

[StephanieZ]

Tangent: this was a fortunate coincidence. I was at the house today; my boys were going to swim, and one of the SIL's (actual daughter) was at the pool with her son. Conversation did come around to this email discussion. This SIL is the one who just recently finished a rotation. We had a very good conversation. She has not responded with anything in the email and told me she was just holding her tongue at the moment and is very annoyed with Jill. This SIL feels that Jill is sort of harping on everyone to do things the way she wants.

 

OTOH, it was very balanced, because this SIL was saying it is very nice if/when anyone can come do something with mom and it does perk her up to get a phone call. She also said she thought Jack was being hypocritical because he did not call or do one thing the whole time Mom was staying with this daughter, but now that mom is with him, he is brow-beating everyone to involve themselves. She also said she thinks it's different and harder in some ways for the DILs; she recognizes that this is not my mother and it isn't the DILs place to jump in and do everything.

 

I'm just really glad this conversation happened. No, it doesn't mean every problem is solved, but it's nice to know that I am not the only one who thinks Jill's wishes were not expressed very well and that I wasn't the only one irritated by it.

 

 

You know what, this 3 month rotation thing might actually be awesome. Everyone gets to live up close and personal what this is like . . . Might make all the sibs better in the end . . . Much better than the typical one-sib-does-it-all and the-other-sib-doesn't-appreciate-it dynamic. Whatever goes on later, hopefully all the siblings will be more supportive of whoever is the primary caregiver and also more compassionate about meeting MIL's needs wherever she is . . .

[kbutton]

I am not really on Jill's side. I'm just trying to suggest possible ways to think about the communication part. I know people who would be using this tactic totally innocently and as their best shot at communication with no ill will and people who would doing this to control others. That said, I am a DIL who doesn't jive with the rest of DH's family in pretty much any way, and that totally sucks. All families have unwritten rules, and not all in-laws navigate them well. I am certain Jill knows she doesn't meld with the rest. It sounds like one couple in the family uses the tactic of not responding to avoid things, and that might be driving part of her pushiness. In my family, not responding is rude pretty much always. In DH's family, it could mean ten different things, and if you aren't biologically related, you need the secret decoder ring and a star chart to know which thing it is this time around. 

 

I am wondering two things about Jill's suggestion:

 

(1) Is is possible that outings have been willy-nilly in the past, and Jill would like to have more notice when an outing will occur because she'd like know when she's going to have a little free time? I would want to know so that I could use that time productively. Maybe people are not communicating their intentions well, and it's disruptive to get MIL ready or to not know when an outing is going to happen (like if someone stopped by on the fly to take MIL somewhere, and Jill suddenly had to drop everything and get her ready, or maybe she was going to run an errand, and someone plans to drop MIL off after their impromptu errand at a time that makes Jill's errand impossible). Maybe she wants to incorporate MIL into her own family routine, and she is being controlling to try to get the outings into a time slot she prefers (if so, there is probably a better way to express all that than being kind of pushy). 

 

(2) Is it possible MIL is at a stage where she's asking lots of questions--why don't I see Quill, or Bobby, or Debbie, etc. even if people are visiting and called because MIL forgets? Perhaps Jill wants to have a concrete answer to that kind of questioning so that she can say so and so is coming on Thursday to take you to thus and such a place. I can tell you that my MIL would find some reason to blame me for not seeing people, and everyone would probably listen to her until it had gone on often enough that someone realized it was her, not me. It would not be pretty.

 

I think at some point, you might have to 'fess up to Jill that you feel controlled when she asks this question in this way and simply ask why she's asking. Does she need help? Does she want the outings to be a bit more consistent because of a wrinkle on her end? 

 

I am also wondering if there could be funds available for all caregivers to hire respite care now and then or to help with whatever aspect of care is most difficult for them? It seems like if MIL were to go into a facility or stay in her own home with care, the money is there (since the rotation idea seems to be about "not putting MIL in a home" instead of about money). Why couldn't that money be parceled out in a budgeted way for each family to use during their rotation to make things easier?

[happymom4]

I've been in the situation of being one of the caregivers for my grandmother (she lived in our house full time, no rotations) and I have to say that unless someone has been through this it's very difficult to understand the major life changes that occur with a ailing adult, especially when dementia or Alzheimer's is involved. You said that the rotation idea wasn't one you agreed with and you were right not to.  Dementia progresses pretty quickly, the early stages go by fast.  If there are 5 people (is that right) rotating her for 3 months, she will not be the same person with the last person as she was with the first person.  She'll decline and reach a point where she can't be practically moved again.  Its a hard thing to see and accept.  

 

As far as your SIL, the whole point of the rotation is to give others a break.  Its not actually a break if you are committed to come once a week for outings.  If your SIL is being reasonable then she can see this if you explain it to her (preferably over the phone, not in email/text ).  If she believes that outings are important then its her responsibility to provide them during her time, if thats too much for SIL, then maybe outings aren't such a good idea after all.  You are not going to cure her ailments or slow their progression by walking through the mall.  Don't get me wrong, being active is good but she can keep her mind and body active gardening at home, talking with her grandkids, etc.  At her age and condition, going out can be very draining.  I think you are right that you SIL is projecting.  At this point I think you all need to sit down with her doctor or another healthcare provider and have them discuss what really is helpful at this stage versus what is not.  

[Guest]

You know what, this 3 month rotation thing might actually be awesome. Everyone gets to live up close and personal what this is like . . . Might make all the sibs better in the end . . . Much better than the typical one-sib-does-it-all and the-other-sib-doesn't-appreciate-it dynamic. Whatever goes on later, hopefully all the siblings will be more supportive of whoever is the primary caregiver and also more compassionate about meeting MIL's needs wherever she is . . .

This is what SIL (at the pool today) was saying. She said something like, "One reason I haven't chimed in is that I know how it is when mom is actually there with you, and I think that each family will see that for themselves as she stays with each." She said there was a ton of things she didn't realize before MIL stayed with her, but it is fine with her - better even - for people to see for themselves when she stays with each.

 

I have a feeling, though, that it won't even get through the whole set of siblings before the situation will need to change again. I have nothing at all to back this up; it is just my hunch. I think another arrangement will have to be figured out and some of the posts in this thread make me believe that only all the more.

[Guest]

I've been in the situation of being one of the caregivers for my grandmother (she lived in our house full time, no rotations) and I have to say that unless someone has been through this it's very difficult to understand the major life changes that occur with a ailing adult, especially when dementia or Alzheimer's is involved. You said that the rotation idea wasn't one you agreed with and you were right not to. Dementia progresses pretty quickly, the early stages go by fast. If there are 5 people (is that right) rotating her for 3 months, she will not be the same person with the last person as she was with the first person. She'll decline and reach a point where she can't be practically moved again. Its a hard thing to see and accept.

 

As far as your SIL, the whole point of the rotation is to give others a break. Its not actually a break if you are committed to come once a week for outings. If your SIL is being reasonable then she can see this if you explain it to her (preferably over the phone, not in email/text ). If she believes that outings are important then its her responsibility to provide them during her time, if thats too much for SIL, then maybe outings aren't such a good idea after all. You are not going to cure her ailments or slow their progression by walking through the mall. Don't get me wrong, being active is good but she can keep her mind and body active gardening at home, talking with her grandkids, etc. At her age and condition, going out can be very draining. I think you are right that you SIL is projecting. At this point I think you all need to sit down with her doctor or another healthcare provider and have them discuss what really is helpful at this stage versus what is not.

It is six kids altogether; DH has five siblings. Two daughters and four sons.

 

I don't know how much has been discussed with doctors; I am unclear on that point. One BIL talked with a friend or neighbor who is a psychiatrist; this person emphasized consistency being optimal (which I don't disagree with) and that is how the majority arrived at this rotation of three months, because this is more consistent than having a different kid assisting every week. But I also feel like this was asked without all the cards on the table. I don't think BIL said that one option is for her to live at her home with assistance from the aunt and a paid caregiver.

[Storygirl]

I cared for my mother with Alzheimer's in my home for almost a year with zero help from other family, who all lived hours away. Oh, my husband was around, and he would talk to her and try to soothe her when she was anxious, and he helped safety proof the home. But I did all of the feeding, bathing, toilet help, clothes changing, and arguing. Because Mom couldn't understand why many things were the way they were, and she had to talk about it incessantly and unhappily. It was exhausting and continuously stressful. She was with me 100% of the time, unless she was sleeping, and even then I worried about her, because I had to sleep, too, and she would often wake up and wander in the night. We had to block her access to most of the house, so that we knew she was safe when we were sleeping.

 

I think it is fabulous that she has so many children who want to help and are willing to share the burden. To be completely honest, I would not want to do for MIL what I did for my mom. Changing dirty diapers, having her yell at me and tell me that I was mean for making her take showers, answering the constant questions over and over and over and over and over again. It took a great toll on me. Her children need to have some frank discussions about who is willing to manage things when it all gets worse, as it will. Helping with bathing and toileting is a real issue. I wasn't willing to ask DH to help my mom with those things. Will the men in your family help? Will the DILs be willing to do these intimate tasks?

 

I know you aren't in a position to make changes to the decisions that have been made, but I doubt the three-month rotation will work out for long, so it will be good for there to be a plan B in place. In the meantime, if MIL enjoys outings, I'd deal with my negative feelings about SIL and offer to take her places sometimes. When it is your three month rotation, you will be glad that the other siblings are coming around to spend time with her, so that you can have a break. It's not pleasant for you to deal with it now, I know, but you will be grateful for the help when it is your turn.

[Guest]

I am not really on Jill's side. I'm just trying to suggest possible ways to think about the communication part. I know people who would be using this tactic totally innocently and as their best shot at communication with no ill will and people who would doing this to control others. That said, I am a DIL who doesn't jive with the rest of DH's family in pretty much any way, and that totally sucks. All families have unwritten rules, and not all in-laws navigate them well. I am certain Jill knows she doesn't meld with the rest. It sounds like one couple in the family uses the tactic of not responding to avoid things, and that might be driving part of her pushiness. In my family, not responding is rude pretty much always. In DH's family, it could mean ten different things, and if you aren't biologically related, you need the secret decoder ring and a star chart to know which thing it is this time around.

 

I am wondering two things about Jill's suggestion:

 

(1) Is is possible that outings have been willy-nilly in the past, and Jill would like to have more notice when an outing will occur because she'd like know when she's going to have a little free time? I would want to know so that I could use that time productively. Maybe people are not communicating their intentions well, and it's disruptive to get MIL ready or to not know when an outing is going to happen (like if someone stopped by on the fly to take MIL somewhere, and Jill suddenly had to drop everything and get her ready, or maybe she was going to run an errand, and someone plans to drop MIL off after their impromptu errand at a time that makes Jill's errand impossible). Maybe she wants to incorporate MIL into her own family routine, and she is being controlling to try to get the outings into a time slot she prefers (if so, there is probably a better way to express all that than being kind of pushy).

 

(2) Is it possible MIL is at a stage where she's asking lots of questions--why don't I see Quill, or Bobby, or Debbie, etc. even if people are visiting and called because MIL forgets? Perhaps Jill wants to have a concrete answer to that kind of questioning so that she can say so and so is coming on Thursday to take you to thus and such a place. I can tell you that my MIL would find some reason to blame me for not seeing people, and everyone would probably listen to her until it had gone on often enough that someone realized it was her, not me. It would not be pretty.

 

I think at some point, you might have to 'fess up to Jill that you feel controlled when she asks this question in this way and simply ask why she's asking. Does she need help? Does she want the outings to be a bit more consistent because of a wrinkle on her end?

 

I am also wondering if there could be funds available for all caregivers to hire respite care now and then or to help with whatever aspect of care is most difficult for them? It seems like if MIL were to go into a facility or stay in her own home with care, the money is there (since the rotation idea seems to be about "not putting MIL in a home" instead of about money). Why couldn't that money be parceled out in a budgeted way for each family to use during their rotation to make things easier?

To the first bolded point: no, Jack and Jill are the "in" group within the family. There's not really a better way to describe it. If the family were a high school, Jack and Jill and "Bob" and "Betty" are the popular kids and are dominant in all the family dynamics. The out-of-state sibling is close to the "top" also; then pool SIl and her Dh; then myself and DH are the "out" group; then the non-communicator sib and spouse are least popular of all. Historically in the family Jill has been *THE* most dominant person.

 

To 1) no, I definitely do NOT think it was that people dropped in and disrupted her schedule. They are waiting for people to call and/or arrange to do things with MIL and it hasn't taken place much. Jill is a critical person - let's just tell it like it is - and this is how she is in general. She looks at what other people do or don't do with a critical eye. That's what I meant when I was saying if Jack or Jill don't actually see that something happened, they don't realize that anything *has* happened. So, for example, someone went over to MIl's and cleaned up the trees and branches from the recent tornado; I don't know which sibling did this, but I know someone did because I go to the office every other day and saw that someone cleaned it up. But if Jack and Jill had cleaned it up, they would broadcast it, partly I guess for back-pats and partly with an accusatory tone like, "Well nobody else did anything about the fallen trees, so *I* had to..." Pool SIL mentioned this today, that Jack acts like a martyr but actually he doesn't do as much as some others, who just do it but expect no notice.

 

To 2) I doubt it. Pool SIL said today that MIL is so easy in the sense that she is not beligerent and doesn't want to inconvenience anybody. The only thing I *know* she has asked continuously since January is when does she get to go back to her own house; this is why DH thinks it is wrong to disallow her to go home.

[katilac]

It sounds like this is becoming more about Jill than MIL. She deserves to see all her children regularly, doesn't she, and not just during each child's three-month rotation? I think Jill is right in suggesting outings or visits from family members as it is in your MIL best interest to have lots of family interaction.

 

Jill's tactics may be off-putting, but it doesn't mean she's wrong. Her three months will be over soon enough, but the one who will be hurt by all this is your MIL.

 

Quill is not saying that no one would visit, just that turning into some kind of formal rotation is another layer of headache. 

 

Exactly. Many people harken back to the "good ole days" when grandma was taken care of at home until grandma died. But here's the deal. Grandma, if she couldn't take care of herself died pretty darn quickly and often times alone unless the family was well enough off to have servants. The living had to make a living, tend the garden, keep the fires burning, earn wages, care for young, and a myriad of other tasks that could not be set aside because an elderly person moved in.  

 

Excellent point. 

[Melissa in Australia]

:grouphug:  :grouphug: :grouphug: