JCWM (Just commiserate with me)

[Seasider]

I'm on my phone right now so can't add likes, but I wanted everyone to know I just had a great in depth talk with hubby and he's firmly in agreement with me. Better than that, he had his own in depth talk with FIL and he now admits he needs help and is afraid he might be abusing her at times... He knows it's become more than he can handle and is open to change.

 

Hubby is willing to make the phone calls tomorrow and I will hope they can find assistance quickly. He's going to call the Elder Care number first.

 

Thanks again Hive. I will be adding likes sometime tomorrow when I can get on my computer. I am very thankful for the suggestions and support - so much better than a JCWM thread!

I am so glad your FIL is now willing to admit he needs help. I pray you will have a productive day tomorrow getting services underway. How relieved you must be feeling!

 

Well done, Mr Creekland.

[Reefgazer]

I don't have anything additional to say that hasn't already been said; I just want to offer my sympathy and support.  My dad died of dementia-related illness last year, and it is a tough road to walk.  There aren't any really good solutions, and my mom and dad wouldn't consider outside assistance until my siblings and I showed up at their home one day and told dad he had to come with us.  He came along calmly. which I didn't think he would do, and only lived another 2 months after that.

[justasque]

...She hated me when she was in her right mind... She's racist (sadly that hasn't changed) and I wouldn't agree with her.  "I" took her son from the only "correct" Christian church (Methodist) and we worshiped in many others.  I didn't raise my kids correctly (FTO).  I didn't keep my house clean enough (she was super clean).  There are other similar things.  NOW she loves me, but there was a time she outright told hubby he should divorce me and another time she threw flowers we'd brought her for Mother's Day into my face before I ever got out of the car....

 

I have wondered whether this kind of behavior might actually be part of the early stages.  Stuff like relying on strict rules and routines (religious "rules", household routines), resisting change (even the normal change such as kids growing up and moving on) and wanting things to stay the same, losing one's ability to be polite and resist emotional outbursts - these behaviors all seem like they're consistent with a brain that is starting, very subtly at first, to shut down.

[Lizzie in Ma]

:grouphug: :grouphug: :grouphug:

[JFSinIL]

Is there anyplace where they could both go, since he is that old, she might be placed in a more restrictive setting but he could be close by in the retirement home part of the building?  We almost placed my Dad in a place where he could have his own small apartment, then move into the dementia unit (same building) when the time came...but his (almost spouse) of 28 years wasn't ready to do that (she was also 20 years younger. Dad was quite a catch before dementia took over).   Dad ended up in a facility that only took dementia folks, and passed 10 months later (Fourth of July this year - we say Dad went out with a bang).  Your FIL is stressed now, and it will only get worse as the disease progresses. His pride and love for his spouse makes him want to be her caretaker, but it is just no longer a viable option.  He needs taking care of, too (having others care for his spouse helps him go back to being a spouse instead of a tired and frustrated caregiver 24/7).

 

Good luck!

 

Another thought - the places that care for folks with dementia are costly, but if she is having trouble eating/swallowing already, the money may not have to last very long :-(

Edited September 5, 2017 by JFSinIL

[Scarlett]

Creekland, how is it going today?  Were you able to make contact with someone to help?

[Tanaqui]

Creekland, I hope things are going better today. Don't lose momentum! Now that you've got an agreement from your FIL, you have to follow-through right away. *hugs*

[Scarlett]

I'm on my phone right now so can't add likes, but I wanted everyone to know I just had a great in depth talk with hubby and he's firmly in agreement with me. Better than that, he had his own in depth talk with FIL and he now admits he needs help and is afraid he might be abusing her at times... He knows it's become more than he can handle and is open to change.

 

Hubby is willing to make the phone calls tomorrow and I will hope they can find assistance quickly. He's going to call the Elder Care number first.

 

Thanks again Hive. I will be adding likes sometime tomorrow when I can get on my computer. I am very thankful for the suggestions and support - so much better than a JCWM thread!

 

 

Ok, I just saw this post!  Awesome you have FIL on board.  

[creekland]

The kindness you are showing here, is what legacy you are passing on to your future generations.  

 

(((ihugs)))) I know it is hard to let go of the past, but maybe now you can form a few positive memories for you, your husband and your children to help you through this difficult time. 

 

Thanks.  My boys are absolutely awesome with her.  I am so thankful and proud of them for it.  It's rare to see then teen, and now 20+ year old guys be so awesome with a senior citizen who is super mentally and physically needy.  I'm prouder of them for the way they treat her than any of their academic accomplishments TBH.  It's carried over to them having sympathy rather than disdain for others when things are outside of the norm - giving folks the benefit of the doubt that something "else" is wrong other than what is "seen."

 

FYI, did you know Alzheimer's patients in the last throes of the disease can forget to swallow? FIL needs help.

 

Yes... and TBH, if another health situation took her quickly, it would be a blessing at this point.  She's been forgetting to swallow on her own at pretty much every meal since at least Christmas, but does better with specific instruction still, so her ability to swallow isn't gone - just her ability to remember to swallow.  I have no idea how close to the end that part is.

 

I am so glad your FIL is now willing to admit he needs help. I pray you will have a productive day tomorrow getting services underway. How relieved you must be feeling!

 

Well done, Mr Creekland.

 

I wish things had been as good today as last night (sigh).  This morning FIL was not on board... saying he's "not ready yet" for her to go elsewhere to live, but at least admitting he'll try to find decent in-home help.  He's said that before... and nothing changed other than a babysitter coming every now and then if he had to go to a meeting.

 

Hubby wasn't going to call - wanted to give him a chance to do things on his own AND specifically asked FIL if he wanted him (hubby) to do the legwork for him and was told no.  I told hubby that I would call then.  Someone needed to.  Hubby called (Elder Care number)... and whoever he needed to speak to wasn't in... so had to leave a message and is supposed to get a return call within 2 business days.

 

I guess I'll see what comes of that, but I wasn't expecting that sort of delay TBH.

 

I have wondered whether this kind of behavior might actually be part of the early stages.  Stuff like relying on strict rules and routines (religious "rules", household routines), resisting change (even the normal change such as kids growing up and moving on) and wanting things to stay the same, losing one's ability to be polite and resist emotional outbursts - these behaviors all seem like they're consistent with a brain that is starting, very subtly at first, to shut down.

 

This is a very interesting thought.  I wonder if anyone has done any correlation stat to see if it is a super early stage or if that mindset is more likely to get Alzheimers, esp with how many of us have seen the abrupt switch in affected folks.  

 

 

Creekland, how is it going today?  Were you able to make contact with someone to help?

 

Well, aside from what I wrote above, we had to return home today - later than planned due to the extra talking hubby and FIL did this morning.  We returned to severe thunderstorms and our house is out of power... sigh.  So I'm on battery now and my phone can't get recharged (except in our car) so...  The good thing is our farm sitter told us the power was on at 2pm today when she was here, so it hasn't been out too long.  I had visions of possible fridge/freezer issues.  We have a generator if it doesn't come back on in the next hour or two.  

 

The other good thing (as I think about it) is FIL has plenty of $$ for MIL's care.  He just needs to spend it.  The dude won't buy a thing unless it's super cheap - even good food or similar (has no problem eating at McD's and/or Wendy's daily though) - but is sitting on a handsome amount.   :banghead:   Why do people do this?  Hubby encouraged him (more than once) to SPEND IT.  He wants to find a caregiver for $10/hour and is worried about whether they will be trustworthy.  Dude... go with an organization that vets folks and offer $25-50/hour or more and you're likely to get someone decent.

 

It did get us wondering if BIL is not in favor of change due to wanting the inheritance though.  Nothing sure, but got us wondering.  Hubby told FIL in very plain terms that we'd rather see them spend the money.  They invested and earned it planning on their future.  The future is now!

[creekland]

((Hugs))

Also find your local chapter of the Alzheimer's Associatioin

http://m.alz.org/find-your-local-chapter.asp

Because they will have local resources, support groups, steps to take etc.- in addition to everything PPs have said above.

Talking with them on the phone helped us immeasurably when MIL needed to go into a memory care facility. I love them.

 

Thank you so much for this!!!  I just found the local chapter's site and sent it over to hubby.  He'll be calling as soon as he finishes the work phone call he is currently on... (if his phone still has a charge - note the power outage mentioned in my last post).

[Laurel-in-CA]

I'm on my phone right now so can't add likes, but I wanted everyone to know I just had a great in depth talk with hubby and he's firmly in agreement with me. Better than that, he had his own in depth talk with FIL and he now admits he needs help and is afraid he might be abusing her at times... He knows it's become more than he can handle and is open to change.

 

Hubby is willing to make the phone calls tomorrow and I will hope they can find assistance quickly. He's going to call the Elder Care number first.

 

Thanks again Hive. I will be adding likes sometime tomorrow when I can get on my computer. I am very thankful for the suggestions and support - so much better than a JCWM thread!

 

Praise God you are in agreement and are moving forward for her benefit! Every human should be treated with respect and kindness, the more so as they are more needy.

 

FWIW my sister, who was on the stop with my parents' care, got significant advice and referrals from the in-town senior center. They knew in-home care people and local groups that could help and gave her a list of options.

[Storygirl]

:grouphug: :grouphug: :grouphug:

 

I'm glad you are moving forward with some plans. It's so hard, I know.

 

About the swallowing... a nursing facility or in-home nursing care can help with that. Mom has her food pureed, so that is is like baby food, and a nurse's aid spoon feeds her. She's been eating that way for a year or two now. They can also supplement with liquid nutrition drinks.

 

[creekland]

:grouphug: :grouphug: :grouphug:

 

I'm glad you are moving forward with some plans. It's so hard, I know.

 

About the swallowing... a nursing facility or in-home nursing care can help with that. Mom has her food pureed, so that is is like baby food, and a nurse's aid spoon feeds her. She's been eating that way for a year or two now. They can also supplement with liquid nutrition drinks.

 

FIL rather insists she eat normal food.  He thinks it's good for her to stay challenged by doing everything she can - and trying things she can't (like dressing herself properly).  Fortunately her forgetting to swallow isn't so bad that she chokes (yet).  Her mouth just fills up with food and she spits it back out in chunks - rather disgusting to watch TBH.  When we're there, we try to pace how much she's eating with reminders to swallow.

[Seasider]

I'm sorry today wasn't easier for you, I imagine it will be a two-steps-forward-one-step-backward sort of process. Grimace face to your BIL.

 

These are summarized briefly, but helpful. It may give you a better idea of how advanced your MIL's condition actually is, and perhaps it would help inform your FIL of what's next.

 

http://m.alz.org/stages-of-alzheimers.asp

[creekland]

I'm sorry today wasn't easier for you, I imagine it will be a two-steps-forward-one-step-backward sort of process. Grimace face to your BIL.

 

These are summarized briefly, but helpful. It may give you a better idea of how advanced your MIL's condition actually is, and perhaps it would help inform your FIL of what's next.

 

http://m.alz.org/stages-of-alzheimers.asp

 

Thanks.  MIL definitely has been in the middle stage for a few years, but seems to be in the late stage now (at least the beginning of it).  Part of what hubby did yesterday was fill FIL in on all the things I've been noticing about her and relaying to him.  FIL is "too close" to her to see some of it I think.  He didn't realize she didn't recognize him by sight - only by voice.  She definitely can't remember anything recent... even right after we get off their boat she can't remember being on it.  Once on another visit it wouldn't start, so we didn't go out, but FIL asked her if she'd had a nice boat ride and she replied she had.

 

I'll admit I use that last fact at times.  I tell her how nice her lawn looks and how I'm glad "we" were able to work on it "earlier."  I'm pretty positive she likes thinking she's been useful, even though we haven't touched a blade or weed in years now.  The guys do the yardwork at this point.

 

Walking is difficult for her.  When we're there we always give her a hand - even to the dinner table.  When she goes off by herself (wandering) she often falls.  A couple of those have been scary, but we've only heard "about" them.

 

Yesterday morning was a particularly bad morning for her and it was very noticeable in her speech.  Her ability to carry on a conversation in the "now" (meaning a sentence or two, but no further) has always been good.  Yesterday so much of what she said I just couldn't piece together what she meant (on top of being able to piece some things together like her calling boats, "cars").  I couldn't distract her much.  I'd point out an eagle or airplane and she didn't know where to look.  She was wondering if folks on TV were talking about her.  Things like that.

 

On good days she might still be sort of in the late middle stage (though she definitely ticks every single box in that stage and has for some time).  On bad days she definitely isn't.  When I look at the role for late stage care givers... the music/certain TV commercials or shows... the photos... the food - those are all things she likes that she can usually seem to get pleasure out of (akin to boat rides and watching boats), but they're definitely only good "now" and not 30 seconds ago.

[creekland]

True to what was said, hubby received a call back today and there is now a case worker assigned to this.  They are supposed to call hubby within 7 days and will see to it that MIL sees a doctor (she never has for this) and what can be done.

 

If you believe in prayer (or similar), please pray that this doesn't come between hubby and his dad or brother.  I'd feel awful if this caused issues with those family ties.  There's no doubt "I" am the person responsible for getting all of this going even if hubby is the one who is making the calls.  It'd be tough to live with if there's not-so-good fallout among those in their right mind.  Only time will tell.  I really hope it all works out for the best for both FIL and MIL and isn't something I've done that I'm going to regret. 

 

I guess it's hard to explain... (sigh) 

[Laurel-in-CA]

Being the catalyst is hard. Change is hard. But so is being stuck with things that aren't working anymore, and that is hardest on your mil. It's hard on your fil, too, and he may not realize how big the load is until he starts to share it. You guys did the right thing!!!

[Jean in Newcastle]

I know that you don't want to be the "bad guy" but protecting those who are helpless and cannot protect themselves or advocate for their own needs always comes first.  Always. 

[Jyhwkmama]

I can't believe she has advanced Alzheimers and has never seen a doctor for it!

 

You are doing the right thing.

[Innisfree]

Hugs. I hope that soon help arrives for FIL, and that you can end up looking back on this moment as a positive turning point. I know that feeling of responsibility is hard right now, when you can't see what's ahead.

[creekland]

I can't believe she has advanced Alzheimers and has never seen a doctor for it!

 

You are doing the right thing.

 

Oh, that's one thing I've been lobbying for for years now - esp since in it's earlier stages they COULD possibly have done some things to delay onset or even just double check that it was Alzheimers setting in and not something like a B12 deficit, but MIL refused to go to a dr and FIL wouldn't insist upon it.  I personally asked him about it this past visit and now am told it won't do any good, so why bother... but he might check with his own doctor when he goes in Oct to see what he thinks.  Even hubby told him he needed to do something NOW, not wait until Oct, but I suspect he (hubby) was willing to call because we've a lack of faith that he (FIL) would do anything on his own sooner.

 

She doesn't even have a family doctor.  I'm hoping the case worker knows of someone (decent) who can take her in, though from everything I've read, there won't be much they can do now.  I think hubby regrets not insisting on her going to see someone years ago TBH, but when someone is still (sort of) in their right mind and refuses, what can one do?  I know he mentioned it to FIL many times - but FIL wouldn't or couldn't make her go either.

[Seasider]

True to what was said, hubby received a call back today and there is now a case worker assigned to this. They are supposed to call hubby within 7 days and will see to it that MIL sees a doctor (she never has for this) and what can be done.

 

If you believe in prayer (or similar), please pray that this doesn't come between hubby and his dad or brother. I'd feel awful if this caused issues with those family ties. There's no doubt "I" am the person responsible for getting all of this going even if hubby is the one who is making the calls. It'd be tough to live with if there's not-so-good fallout among those in their right mind. Only time will tell. I really hope it all works out for the best for both FIL and MIL and isn't something I've done that I'm going to regret.

 

I guess it's hard to explain... (sigh)

You should never regret standing up for the poor and powerless, no matter the consequences. I am sorry there's a prospect of broken relationships, and yes, that comes with fear and mourning. Could you and your dh sleep well at night if you left your MIL to remain in the situation as it has been up til now?

 

I think you are like Galadriel. You must choose to do the right thing, for the good of those who are poor and powerless, but the world won't be the same for you. Somehow I think life - certainly the afterlife - will be richer for your willingness to make the hard call.

 

I will JAWY - it's a sorrowful and challenging time. But you are living it out admirably.

[creekland]

Hubby just called me (he's been out in the engineering field working all day).  He just got off the phone with a lengthy call to BIL explaining what is going on... all of it... and BIL is on board - with the whole thing - and offering to help!   :hurray:

 

NOW, my mind is at ease.  Perhaps my quickest positive answer to prayer yet and I'm thankful beyond words!  With the two of them on the same side, anything is possible.  If the case worker can do their end in a decent manner I foresee the best outcome possible before too long.

 

(Now I just wish I'd known I could do/start all this sooner, so anyone reading who is in the same situation - there are options for those of us not in the line of command...)

 

:party:

[Seasider]

Oh, joy!!! Happy with you. Things are going to be ok. Still hard, but good in the right ways.

[Carol in Cal.]

So glad to hear this!  Wonderful news!

[Little Nyssa]

Sometimes us DILs have to be the instigator. My dear sweet MIL would not be safe in memory care right now if I had not taken charge.

[creekland]

A rather yucky update came today.

 

Apparently MIL has fallen 4-5 times over the past week - BIL found out yesterday.  DH found out today.  I'll spare the details as they aren't pretty, but those falls have included her (and FIL) almost drowning, significant dragging, and more.  The last fall ended up with FIL calling 911 and expecting the EMTs to help him get her back in their house.  The EMTs insisted she go to the hospital instead (THANK YOU!).  At the hospital she was diagnosed with a UTI and is being treated for that - expected release tomorrow - Wed.

 

What's NOT happening is anyone doing anything about her Alzheimers and there's absolutely no way they've "missed" it.  I have heard that they plan on having her swallowing evaluated, but nothing else.

 

She will be discharged to rehab (in patient) for a week, possibly more.  From there FIL is expecting her to go back home.  Someone PLEASE tell me (truthfully) if rehab folks will allow this or will they insist on getting her real help?

 

I'm having a hard time fathoming how knowledgeable people are willing to just ignore the obvious - going back to the nurse who returned her to FIL after she wandered from being left in the car (in VA, in the summer) while he went to a dr appt.  Isn't illegal to leave a dog in the car under those circumstances?  And then the police who have returned her to FIL a couple of times.  

 

I guess I just expected some of those folks - or the doctors/nurses working with her now - would have some push to make things happen.

 

Will rehab?

 

The numbers DH has called have been helpful, but they are slow (no evaluation even set up yet - each call has taken the max time they've said it would to hear back), and it seems like they are mainly to help give FIL information, not enforce anything.

 

Unless the UTI is causing all of her latest falls and progression, I really think MIL is not going to be with us much longer, but I'd rather see her not drown or fall or be dragged, etc.  I still want to see FIL's life improve too.  (sigh)

[Guest]

I can't offer any advice, but I'm glad she is safe and didn't drown (!!!). That's truly scary and I hope the professionals step in and don't just let this keep on happening. There may need to be some strong pushing from you or DH for that to happen, though.

 

Hugs and prayers :(

[Seasider]

What you are describing is what the social worker in our case called a "crisis level" situation. But the action that needed to be taken once the situation was assessed, still fell to the family as family responsibility. The doctor was willing to write nursing home orders, but making the arrangements for a change in living situation was entirely left to family. I have no idea what they do when there are no adult children to assist.

 

In our case, even the SW advised that adult protective services be called in. We decided on an alternate course of action instead of making that call, so I'm unsure of *exactly* how involved protective services would have gotten.

 

Creekland, what you describe is very dangerous for both of them. You have tried so hard to conform to their wishes, but your FIL is not accepting the most basic, necessary level of help to keep them safe and provide adequate care for MIL. This is very poor judgement on his part - are you very sure that he is of sound mind? You (dh and brother) may actually need to confront FIL on this point.

 

What a hard, hard situation. I hope a resolution will come soon.

[Seasider]

Specifically with regard to her safe discharge from the hospital/rehab - there should be a social worker and/or patient advocate available for you to speak with. I had to be the super squeaky wheel and lean on them really heavily to keep the patient as long as possible. But the hard part is that their hands are often tied as they have to work with the mandates of insurance companies and Medicare. It is incredibly frustrating.

[Reefgazer]

To the bolded:  I found out the hard way that what they can do varies by state law, but in NY they cannot make her do diddly if she says no.  New York has very strong laws that protect the elderly, even incompetent ones that result in a direct threat of danger to themselves; I am not familiar with PA laws.  In NY, they would need to take her to court and get her deemed incompetent first.  Same with FIL.  If FIL insists on taking care of her, then they can't admit her to a nursing home if FIL won't agree.  This is because FIL must sign all the papers agreeing to it, and also agree to take on financial responsibility for the nursing home payment.  If he refuses, the nursing home can go to court and declare her a ward of the state, and then Medicaid will pay and the state makes all medical decisions for her from then onward.  But no medical facility wants to take the time and expense of doing this, especially if their facility is close to capacity (no financial reward in it because Medicaid pays way less than private insurance).  There are social workers assigned to each patient that specifically help with nursing home placement, but the patient and their legal representative have to agree to go to the home first. 

 

There are a number of states with laws that do not protect the elderly person's decisions quite so strongly.  I am conflicted on how I feel about that, but in any case, your state may be one that allows for adult children to take a stronger role in parent care; I know Virginia makes it easier to do than NY, which kind of surprised me.  Your best bet here is having a go at FIL and get him to agree to it.  My dad had swallowing difficulties as a result of dementia, and if they are evaluating her for swallowing difficulties, she has pretty advanced dementia; by the time dad was evaluated for this, he only lived another month and a half.  My parents were very much like your FIL and MIL; in denial up until the end because facing losing your spouse is terrifying.  I don't think that's diminished mental capacity necessarily; I think it is fear at losing a long time spouse and needs to be handled gently.  I'm sorry, I feel for you - there are just no good options for dealing with an advanced Alzheimer's patient.  Good luck with this.

A rather yucky update came today.

 

Apparently MIL has fallen 4-5 times over the past week - BIL found out yesterday.  DH found out today.  I'll spare the details as they aren't pretty, but those falls have included her (and FIL) almost drowning, significant dragging, and more.  The last fall ended up with FIL calling 911 and expecting the EMTs to help him get her back in their house.  The EMTs insisted she go to the hospital instead (THANK YOU!).  At the hospital she was diagnosed with a UTI and is being treated for that - expected release tomorrow - Wed.

 

What's NOT happening is anyone doing anything about her Alzheimers and there's absolutely no way they've "missed" it.  I have heard that they plan on having her swallowing evaluated, but nothing else.

 

She will be discharged to rehab (in patient) for a week, possibly more.  From there FIL is expecting her to go back home.  Someone PLEASE tell me (truthfully) if rehab folks will allow this or will they insist on getting her real help?

 

I'm having a hard time fathoming how knowledgeable people are willing to just ignore the obvious - going back to the nurse who returned her to FIL after she wandered from being left in the car (in VA, in the summer) while he went to a dr appt.  Isn't illegal to leave a dog in the car under those circumstances?  And then the police who have returned her to FIL a couple of times.  

 

I guess I just expected some of those folks - or the doctors/nurses working with her now - would have some push to make things happen.

 

Will rehab?

 

The numbers DH has called have been helpful, but they are slow (no evaluation even set up yet - each call has taken the max time they've said it would to hear back), and it seems like they are mainly to help give FIL information, not enforce anything.

 

Unless the UTI is causing all of her latest falls and progression, I really think MIL is not going to be with us much longer, but I'd rather see her not drown or fall or be dragged, etc.  I still want to see FIL's life improve too.  (sigh)

 

Edited September 25, 2017 by reefgazer

[Melissa in Australia]

Hugs

[creekland]

Ok, thanks for the info.  I guess we'll have to hope that FIL finds he likes the relief he has by not taking care of her 24/7 when she's at the hospital and rehab - at least enough to put more effort into getting in home help.  I have started to wonder if he's of sound mind hearing about how many times she's fallen, the horrid details of most of those, and him thinking EMT should just have helped him get her back into the house.  Even when she nearly drowned (he admitted he was thinking he would too as he rescued her - he's 89!), it still didn't occur to him that she should be looked at.  Instead he just told her to get in the car (after they were cleaned up) and she fell again trying to (he was closing up their cottage).  He can't physically pick her up any longer.

 

We're not there right now. We're at my mom's (she's getting chemo again). BIL was with him over the weekend, but had to return for work.  Then next month we have our trip to Jordan.  I'll admit it's frustrating with how many things are going on at once.  This last news we received yesterday left our heads spinning.  We will have to see what happens with getting rid of the UTI + rehab and figure out a schedule from there.

[Seasider]

Ok, thanks for the info. I guess we'll have to hope that FIL finds he likes the relief he has by not taking care of her 24/7 when she's at the hospital and rehab - at least enough to put more effort into getting in home help. I have started to wonder if he's of sound mind hearing about how many times she's fallen, the horrid details of most of those, and him thinking EMT should just have helped him get her back into the house. Even when she nearly drowned (he admitted he was thinking he would too as he rescued her - he's 89!), it still didn't occur to him that she should be looked at. Instead he just told her to get in the car (after they were cleaned up) and she fell again trying to (he was closing up their cottage). He can't physically pick her up any longer.

 

We're not there right now. We're at my mom's (she's getting chemo again). BIL was with him over the weekend, but had to return for work. Then next month we have our trip to Jordan. I'll admit it's frustrating with how many things are going on at once. This last news we received yesterday left our heads spinning. We will have to see what happens with getting rid of the UTI + rehab and figure out a schedule from there.

My heart aches for you, with your mom, your inlaws, and trying to be a regular parent of your own all at the same time, it's just sooo much. You are a quite rational person but do remember that you can only spread yourself so thin, especially over situations you didn't cause and can't control. Be there for your mom, now. Be there for your kids when they need you. Advocate for your MIL, but let your dh and his brother be the force behind any actions on that front. When you are in Jordan, BIL can be the responsible party. It's hard to let things go when (1) you see clearly something needs to be done, and (2) you are the type of logical, capable person who is used to getting things done, but do not heap guilt or excessive burdens on your conscience. It's not good for your own health.

 

Pray hard. I am praying for you.

[Pam in CT]

Oh honey.   :grouphug:

 

 

My father's had three post-hospital-discharge stints in (two different) rehab facilities over the last 15 months.  While the rehabilitative assistance to him in the moment (mostly PT and OT services) was to my mind fairly limited, the break it gave to my mother -- the sheer relief she felt in being able to get a full night's sleep without worrying that he'd get up and fall, in having someone else make meals for him, in having someone else assist him in the shower -- was indispensable in getting HER over the hump and willing to accept services that come to the house.

 

They now have a complex schedule of various Medicare-covered, private-pay, and volunteer people come in for anywhere between 1-3 hours just about every day-- a VNA nurse who does checkups and physical therapist who has him practice self-care routines, a home aide who helps with bathing (my mom can't lift him), a Meals on Wheels volunteer who drops off lunch once a week, and a visiting volunteer, I think also from Meals on Wheels, who just sits and plays cards with him while my mother nips out to the grocery store etc.  And I go up one day a week so she can go to her book group and schedule her own appointments.  It's still a tiny, tiring life, but a lot better than it was before she was willing to accept help, which began out of that first stint in rehab.  

 

I hope your FIL gets over his hump.  It is a hard walk.

 

 

 

 

 

[TechWife]

First, a disclaimer - my parents were in and out of rehab several times. We had one good experience with my mom, two terrible experiences with her and two terrible experiences with my dad. The quality of care varies widely. Here are some things to keep in mind, though. If she is not able to participate in her therapies (follow instructions, etc.) then she will not be able to stay because she must be able to make progress in order for Medicare to pay for it. We had terrible responses from two different rehab facilities over the years with regards to pain management. They simply weren't able to manage it. If she is in any pain from falls, say on top of it. They should evaluate her chewing and swallowing while she is there - a speech therapist will do that. If they think she shouldn't have solid foods, then they won't give them to her. How good they are at explaining the why behind that decision to your FIL is a bit of a crapshoot and will depend entirely on the competence of the staff. In fact, whether or not they even tell him is a bit of a crapshoot. They are supposed to have care conferences after a certain number of days, but our experience with those was inconsistent and, in my opinion, they come too late, they should occur far earlier.

 

Ask your FIL to sign a release so that the hospital and the rehab center can talk to your husband and BIL and possibly you. If he won't do this, this doesn't mean that you can't talk to them. You can call them and tell them anything you want to, they just can't tell you anything about her. You can just tell your FIL that you want to be able to check in on her and he will likely sign a release. This will be a form he signs as part of the admission paperwork. Now, the rehab may try to tell you that they want one family member to talk to and use that as an excuse not to spend their time communicating with families. Keep in mind that is their preference, it is not a law. If there is a signed release they need to communicate, period. I've talked to some fairly manipulative administrators over the years - they really try to exercise control over family dynamics that they have no business and no legal authority to do. I don't have much good to say about many of the long term care administrators that I have met.

 

There should be a lot of discharge planning. Your husband or BIL or yourself need to be part of that discussion. But, from the beginning, someone needs to make it clear that she needs extensive support to return home and that another placement may be in her best interests.

 

I am out of time for now. I've been down this road, sadly, and if I can answer any questions I'll try to lend my voice of experience for you. I'll check back later today.

[mom2scouts]

You are at the point where you need to do something drastic. My FIL had Alzheimer's and MIL had already passed. FIL was seeing a woman who let him do things unsafe (driving after we took away his car because of repeated accidents and not understanding traffic lights) and she refused to cooperate or even talk to us. We practically kidnapped him from his assisted living apartment with the help of management and police and took him straight to a locked Alzheimer's facility. It was a good decision. As someone else said above, you can get lots of information, but ultimately, the family has to make the decisions and execute the plan. My dh had to get legal guadianship. You may have to get documentation that FIL can't care for MIL and have your dh or BIL file for guadianship or power of attorney.

[mmasc]

I'm so sorry you're going through this.  It is so very difficult.  You've gotten lots of good advice above, so I'll only add that this is your (actually your DH's/his brother's) chance to keep MIL safe and to help her not return home.  Once she is in the rehab facility, you MUST advocate for more than a week.  I'm sure she will not be functioning well enough at that point to be released, so it should be easier to push for more rehab time.  Hopefully, this will also give FIL a break, as well as opening his eyes to the break and care that both he and MIL need.

 

Good luck, and hugs to you during this difficult time.

[Seasider]

But, from the beginning, someone needs to make it clear that she needs extensive support to return home and that another placement may be in her best interests.

 

.

Techwife's entire post is good, I just want to light fireworks under this part to emphasize how loudly, how frequently, and to how many people you should say this. Stridently.

[creekland]

We won't be kidnapping, but we sure will be pointing out reality and the benefits of having help while praying that FIL can see it all as it plays out in front of him.  I think having her almost drown in front of him might have turned on a warning light.  If he can see a solution in action (and I'll pray it's a good rehab!), I'm really hoping it will work out this time.

 

I think part of it could very well be his own loneliness living alone so will be pondering solutions for that too.  Living with BIL or us might be possible, but I know he wouldn't want to leave MIL.  Our "house" has a problem that all of our bedrooms and only bathroom is on the second floor.  Steps aren't impossible for him, but he struggles.

[TechWife]

We won't be kidnapping, but we sure will be pointing out reality and the benefits of having help while praying that FIL can see it all as it plays out in front of him. I think having her almost drown in front of him might have turned on a warning light. If he can see a solution in action (and I'll pray it's a good rehab!), I'm really hoping it will work out this time.

 

I think part of it could very well be his own loneliness living alone so will be pondering solutions for that too. Living with BIL or us might be possible, but I know he wouldn't want to leave MIL. Our "house" has a problem that all of our bedrooms and only bathroom is on the second floor. Steps aren't impossible for him, but he struggles.

Would he consider assisted living if he and his wife were at the same facility?

 

Also, if either of them is a war veteran, there is aid & attendance money available to them from the VA. Let me know if you want more info on that and I'll send you a link.

[foxbridgeacademy]

My great grandparents lived in an assisted living apartment for the last years of their lives.  Grampa had Alzheimers and granma had diabetes.  She took care of him with regular (2-3X per day) visits from a nurse.  Even end stage for him, she was right there doing all the non-medical stuff but she had time to go shopping, sit out and have tea with the neighbor.  She cooked their meals (until he went on a feeding tube) cleaned the apartment.  It was still hard on her having to leave the huge farm they had raised their children on for an apartment but after he died and she started getting worse (heart disease) her daughter, my grandmother, was able to move in and take care of her until the end. No hospitals, no separation from family, regular nursing care and still the feeling of being independent and "at home".  

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[creekland]

Would he consider assisted living if he and his wife were at the same facility?

 

Also, if either of them is a war veteran, there is aid & attendance money available to them from the VA. Let me know if you want more info on that and I'll send you a link.

 

He has said no to this.  He's not ready to give up his independence.  Neither is a war veteran (right age, wrong health to join), but thanks for the offer.

[creekland]

Just one last update (hopefully it's the last anyway!).  MIL is now in rehab and plans are for nursing home care in a Dementia facility afterward.  While in the hospital FIL's eyes were opened to how bad her mind really is (he couldn't believe she didn't remember BIL's same day visit or even who he was), but he also saw how nicely therapists/aides worked with her AND achieved success with what they wanted (mainly basic PT things or changing sheets, etc).  He realizes they are better at this than he is at this point.  "They know how to ask," etc.

 

I think too he's enjoyed the break from not having to continually clean up after her or watch her.

 

He and BIL spent time visiting facilities to try to find a nice one for her in an area where he can visit often.

 

TBH, with the level she's at, none of us think she has much longer, but at least it should be nicer for her last days - no yelling, no hitting, no mocking - just nice visits so she can enjoy the time in the "now" as best she can.  With FIL being 89, it's nice to think his last days or years are able to be spent with less stress too.

 

Their case worker has been in touch and will help guide them all.

 

Thanks again Hive.  Y'all are awesome with your knowledge.  I'll admit to wishing all of this had happened a year or two ago.  Ok, not the falls, almost drowning, dragging, or UTI part, but the rest.

[NorthwestMom]

I'm happy that is is getting resolved successfully for you all. What a relief!

[Laurel-in-CA]

Your update makes me thankful! It's a huge responsibility and such a relief to have help with it and make things better for the person who is failing and the person who is caring for them. 

[Twigs]

Thanks for the update.

[goldberry]

That's a good update, Creekland.  I'm so sorry you are all going through this.   :grouphug:

[Lilaclady]

Great update.