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24/7 caregivers?

Who deal with sundowning, midnight bowel incontinence and hallucinations?

Make sure the "boys" have that all accounted for. And that the apartment complex allows feces-laden bedding to be laundered in the communal laundry room. Mine doesn't.
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NYDaughterInLaw Sep 2019
I can see that conversation now: "Mr. Apartment Manager, what is the policy about washing poopy clothes and bed linens in the $1.25 washers downstairs?"
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I told hubby that my initial reaction was all around skepticism and worry that FIL being in a regular apartment building would delay our planned departure back home in 1-2 years.

At indy living, all of FIL's meals, utilities, activities, transportation, housekeeping, etc. are included in his rent. It gives us the peace of mind that comes with knowing he's surrounded by all the help he needs plus a memory care building should that become necessary.

At this point, I'm not sure if the "boys" are trying to puff up their dad's self esteem or just incapable of seeing the warning signs regarding their father.
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NYDIL: Your FIL has been diagnosed with dementia, yes?

It only goes in one direction. Moving a person with diagnosed dementia from Independent Living with Caregivers to a regular apartment complex with part time caregivers is moving him to a less supportive environment.

Has his doctor weighed in on the appropriateness of this move? Are there indications that he needs LESS or DIFFERENT care than the IL environment provides? Off the top of my head, I'd say if he needs private caregivers in IL, that is an indication that he needs a HIGHER level of service.

Have you thought about suggesting to DH and BIL that they hire, temporarily a Geriatric Care manager to assess FIL's needs, agree to abide by her/his recommendation and sign on for that person to explain to FIL what his options are?

There is too much attention being paid to the preserving of FIL's frail ego going on in this family for anyone to make a good decision.
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NYDaughterInLaw Sep 2019
I completely agree that too much time and energy is being put toward preserving FIL's frail ego.

Yes, he has been diagnosed with mild dementia/cognitive decline and no, his doctor has not been consulted, and I think consulting him is a good idea.

FIL's decline has become worse since MIL died, and I don't understand why the "boys" believe that he's not going to get much worse. He already has private aides to help him and I don't want to spend my time coordinating aides if one wants vacation or quits or whatever. And I've told hubby that.

It never occurred to me that *we* needed a Geriatric Care Manager for this situation that, to me, seemed like something too small for a professional to want to handle. I will suggest it to hubby.
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NyDIL, you need someone with "cohones" who can stand up the menfolk in the family.

Whether that's the doc who says "look, you're putting your father in danger" or the GCM who says " You're paying me, I've got a degree in this stuff, what part of what I'm telling you don't you all understand; he needs MORE care, not less", or YOU who says "I'm outta here, you guys are kowtowing to a person with limited capacity"--someone needs to call foul and say "no more".
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NYDaughterInLaw Sep 2019
I haven't visited FIL since he told us he didn't like the view at that one bedroom. And I told hubby that I was done hemming and hawing about his father. He's not my biological father and yet I have put more blood, sweat and tears into that miserable than most combined. And it feels like a never-ending series of marathons.
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My sister and I considered a similar rental arrangement when Mom's AL found her to need a higher level of care than they offered after her (second) broken hip. But we quickly realized all the negatives you listed plus the reduced socialization with other elders. 

And rent, utilities, groceries, 24-hour caregivers, etc. would have made it cost-prohibitive in our case. So we placed Mom in an AL that could transition her to their MC which occurred quickly. It was a good choice for Mom and us - she had daily planned activities, entertainment, excellent food, and a (mostly) caring staff.  There was also a nurse on duty during the day.

Would renting actually result in a significant savings over FIL's present facility?  How would his quality of life be affected by a move from his IL?

I also wonder how this arrangement would delay your own plans to return to your hometown? I know a family member or maybe a geriatric care manager would need to be available to oversee FIL's needs and care in a rental, but you mentioned it would only cause a delay, not a deal-breaker.  What would be different in a year or two?
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Moving FIL from his present indy living to a rental would cut his monthly expenses in half. That's what my husband calculated and he overestimated cost of everything from food to adding another shift of caregivers.

I haven't gone to visit FIL since he told us he didn't like the view at the one bedroom.

He's a miserable person. When his wife got sick he started becoming one and it has only gone into overdrive since her death. I have no more energy to put toward his quality of life. I am tired.

A delay in moving back home was one of the objections I raised when the idea of moving FIL to a rental came up. I will not delay moving home and I informed all of the brothers that I will be moving home within 2 years. Neither hubby nor any of his brothers can ever say "we didn't know she was going home".

Hubby and I have taken a huge financial hit by taking care of his parents. We have lost income, spent down savings, incurred extra and unforeseen expenses, etc. I have calculated that within 2 years I comfortably will have saved enough money to move back home.
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Linzy6 Sep 2019
I'm impressed that you uprooted your life to the extent you have in support of your DH and in-laws. Certainly it is time for your desires to take priority and it sounds like you are getting that point across to hubby. Yay! I think you may see FIL's mental state and his needs more clearly than the sons do.  I hope they listen to you.

Interesting there would be that much of a cost savings with the apt. Maybe that setup could work, for a while at least. I'd be concerned about keeping highly competent, dedicated caregivers who might also be taking on more housekeeping chores: meals, laundry, cleaning, etc.

 There are apt-sized washer and dryers -- DH and I used these when first married. I hooked the washer to the kitchen sink once a week and did laundry which I carried to our spare/guest bedroom which was the only place with room for the dryer. Better than walking up and down steps to the laundry room located in a different building.

It would be best for FIL to be in a place designed for aging folks' needs, with features such as walk-in showers large enough for a shower bench, doorways wide enough for a wheelchair, automatic doors to the outside, a covered entrance for car pick ups and drop offs. Hopefully, too, at least one other (willing) family member would live nearby to handle the inevitable emergencies, and to accompany to routine dr/dentist/eye/podiatrist appts and provide some socialization opportunities. 

There are so many variables that have to be taken into consideration -- FIL's age, health, disabilities, financial picture.  I hope you'll give us updates on what you decide on and how things work out over time.
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Barb suggested using a Geriatric Care Manager as a source -- I wonder if they could give you other housing ideas that would stretch FIL's money longer?
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"It would be best for FIL to be in a place designed for aging folks' needs..." He lives in an indy living designed for aging folks' needs. Moving him out of there seems bananas.

"Hopefully, too, at least one other (willing) family member would live nearby to handle the inevitable emergencies, and to accompany to routine...and provide some socialization opportunities..." My husband and I have been those willing family members. Let the other family members worry about themselves when they see the miserable, needy side of FIL.

"There are so many variables that have to be taken into consideration -- FIL's age, health, disabilities, financial picture...." We took ALL of those variables into consideration when we moved my inlaws to indy living and when we asked FIL to downsize at the indy living. I'm not reinventing the wheel. He needs to stay where he is. He has mild dementia now and they have a memory care building, should that be necessary. This "let's move dad to a rental" is navel-gazing poppycock!!!

I looked into a GCM. In my opinion, they are for people who are far less well-versed in the ins and outs of caregiving, aging in place, and planning for the future than me. I don't need a GCM to tell me that FIL has no business moving to a rental. Not a single person who has responded to this thread thinks that's a good idea. I trust all of you to guide me far more than I will ever trust one GCM!!!

If the "boys" don't want to listen to me they will suffer the consequences and I will grin and think to myself "told ya so!". I burned myself out once while MIL was still alive, and promised myself never again. FIL does not care one bit who he burns out. Pure selfishness.
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NYDIL, I am a professional in my field. No one in my family thinks that my opinion is worth bupkiss when I tell them (if queried) what they should do.

There is something about paying for advice that makes people pay attention to that advice.

I hope that YOU are not the one paying for dad's care or for any other part of this drama. That would be wrong. That would make me detach from the situation in a financial and personal way.
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NYDaughterInLaw Sep 2019
Goodness, no, we are not shelling out money to pay for FIL's care. Money is the smallest part of what's making me detach from this situation; it's FIL's selfishness and miserableness that are.
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I'm among those who agree that moving to the available 1 BR in current facility sounds like a good plan that likely would have minimal negative impact on FIL.  

However, if the sons are concerned enough that Dad will outlive his funds to consider an apt, it might be good to also explore less expensive facilities. We moved our parents to a very nice IL in the next town when they were about 90. Over the next several years this saved tens of thousands of dollars which later helped Mom remain in good ALs and MC. And they gained a second bedroom and bathroom in the cheaper IL.  Within about a year, two of their close friends from the first IL followed them to the second, also for the cost savings. The main drawback was a longer commute for my sister to visit them on weekends.

But you have the whole picture of this situation, and there may not be comparable, cheaper facilities within a reasonable distance. Just sharing my experience of looking at facilities previously not considered.
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There are a few comparable and cheaper places nearby that I toured when MIL was still alive. I'm not visiting them again. I'm not calling for brochures again. I'm not doing the due diligence again. If money is their concern, the "boys" can do the heavy lifting for a change.

I found the place FIL lives at now. I communicated with the Director before touring it, and then toured it twice before showing hubby the brochure. How much would a GCM charge for that service, which I provided for free?

Had their father listened to my hubby, FIL's POA, and moved to a one bedroom after MIL died, his money would last 5 years longer (5.3 years to be exact). That's a lot of schkaroll (what my Italian friends call money).

Now that 2 of his brothers are involved in active discussions with their dad, plus the fact that I have made it abundantly clear that I am tired of FIL's nonsense, hubby hasn't brought up what's going on with his father. It used to be a near-daily topic of conversational updates.

I've also noticed that, even as recently as a few months ago, I would have been interested to know what was going on with FIL. Now, I don't care to know and I'm not even curious. I haven't visited FIL since he said he didn't like the view from the one bedroom, which got me cheesed off, and hubby said I'm not visiting because I want to punish his dad.
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You're not "punishing" his dad. You are "taking a break from the craziness".

I can empathize with the "view" issue. My mother, who spent a great deal of time in her IL room, needed to be in the front, where she could see the "comings and goings". She was in one place where she was in the back of the property and it led to all sorts of paranoia about what might be happening.

It sounds as though this is a big issue in your MARRIAGE. Have you and DH considered sitting down with a therapist and working on this?
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I feel I am taking a break from the craziness and that I am under no obligation to allow FIL's craziness to consume any more of my valuable time and energy. You said it before: "There is too much attention being paid to the preserving of FIL's frail ego..." Wouldn't hubby need individual therapy before any marriage counseling could ever work?
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BarbBrooklyn Sep 2019
Not necessarily. If nothing else, it would give YOU clarity.

After many years of failed attempts at marriage counseling (and individual therapy for me, as DH refused to go himself) a very wise doc asked me, during our first session, if I was willing to change all the things about myself that my husband found objectionable.

I was so angry, I could have spit! It wasn't ME that needed to change, it was him, couldn't she see that!

It occurred to me afterwards that HE was never going to change. The only person I could change was me. And no, I wasn't willing to make the changes he "required". It was quite clear at that moment that it was over. After 24 years, it wasn't like we hadn't tried.

We are both happier for gotten beyond that marriage. Both of us are re-married; it was win/win, for sure.
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I didn't see counseling from that perspective, and you're right. Counseling certainly could not hurt. I love my husband and am willing to hear what he finds objectionable about me as long as he's willing to hear what I find objectionable about him. If he isn't, well then I suppose that will be my moment of realization that it's over.

Any suggestions on how to find a counselor whose right for us? We have strong cultural differences and I'm worried that, if the counselor identifies more with his culture, that I won't be heard. I know they're supposed to be impartial but we're all human. And what about gender of the counselor?
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BarbBrooklyn Sep 2019
Tough question. Good marital therapists are hard to find.

Might your PCP have any recommendations?

A male therapist who is of your husband's culture MIGHT be a good fit, because DH would be predisposed to feel "heard" and if the therapist is well-trained, he would be dispassionate about seeing the dysfunctionality in the situation.

Think about pursuing individual therapy for yourself. When this was first suggested to me, I heard it as "you are the one who is crazy". I later realized that it meant "you are the one who is amenable/flexible and sane".

Give this some thought. You are not in an easy situation, but right now, you both seem very locked into your respective positions. Not a good place for a marriage to be. If the marriage is going to survive FIL's dotage, you need some assistance. No shame in seeking it out.
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Update: I burst out crying in hubby's car today while we were on our way to run some errands. He asked what was wrong and I told him that, all this talk of moving FIL out of indy living and into a regular apartment building was stressing me out so much that I cannot sleep. I told him that, if it didn't work out, WE were going to be the ones who had to pick up the pieces and glue FIL back together.
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I'm sorry to read how stressful this situation has become.  It sounds like DH and his brothers are still considering the apt to be a viable solution.  It will require a lot of work and coordination for this setup to succeed.  Are the sons up to it?  Or do you think you'll be called on to deal with the problems that come up? Can you simply tell your DH what you are and are not willing to do if he chooses this option you strongly disagree with?  

My husband and sister-in-law helped only with the first big move from our parents' home. We didn't ask or expect the in-laws to take on any responsibilities for our parents' old age needs or to help with further moves over the next 14 years. And they didn't volunteer! It was a lot of work for my sister and me, but we did so willingly and with zero expectations of help.  Your DH and his brothers should be thinking the same way.
 
If they go through with it, hopefully the apt can be rented on a month-to-month basis, so FIL can be quickly moved when Memory or Nursing Care becomes necessary.
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NYDaughterInLaw Oct 2019
No reputable building/landlord is going to go through all the trouble of renting to FIL on a month-to-month basis. There's another thread on the forum now about a volunteer board seeking protocols about dealing with their frail elders. Have you seen it?

The sons are not up to moving FIL again and, frankly, neither am I. He lives where he's safe and has access to everything he needs now and in the future. Should I be called upon to help execute this fool's errand, I will channel Nancy Reagan and "just say no".
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Glad to hear you won't let yourself get involved in the problems that are bound to arise! Not your responsibility, especially when they are rejecting the current, sensible living arrangement you researched and put in place. 

Hopefully your hubby will see the impracticality of the idea before it happens. I even wonder if FIL would be accepted as a tenant in a reputable apartment? Wouldn't his cognitive impairment and health issues be a red flag to a prospective landlord?   

I wonder, too, if your DH's apt idea is rooted in avoiding the possibility of needing public assistance in the future? The idea of using Medicaid was never acceptable to me, and it was only with much sadness that I realized it might become a last resort in the case of my mother. When the funds were down to about 6 months' worth of MC rent, I finally had to accept that my parents' and later my careful money management (as POA) had gone as far as possible, while ensuring they were always in safe and appropriate facilities. 

Maybe you can convince DH that Medicaid has to be viewed as a necessity if and after FIL's savings are depleted in an *appropriate* setting.

(I hadn't seen the thread you mentioned, but just found it. Very interesting reading!)
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I too doubt that any landlord would want to rent to FIL. His frailties are laid bare in conversation and especially so when strangers ask him questions. Any landlord will ask lots of questions and probably including "Why, good sir, are you moving out of independent living?" What is he going to say? "My sons are making me move because my money will run out"?

"I wonder, too, if your DH's apt idea is rooted in avoiding the possibility of needing public assistance in the future?" Yes because FIL is living above his means. Why should the good taxpayers pay for FIL when he squandered his money? He is burning through his money at 50-percent more than the rate calculated and budgeted. And hubby as POA was more than generous in budgeting for his dad's needs. Moreover, the extra money is being spent for no justifiable reason. For what does FIL need a two bedroom in indy living? When MIL was alive it made sense but now it's profligate. Public assistance is for people who need it. FIL doesn't need it.
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Ugh. Hubby wants me to visit his dad today.
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TXGirl82 Oct 2019
Why? On your own?
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If you feel that FIL should not have uncontrolled access to money (debit, credit) you can get a reloadable credit card that you can control exactly where it can be used. The company is called True Link. For a small monthly fee, you can control where it can be used by category, down to the specific store. So for my mom, no internet or phone purchases, but she can order food over the phone. No air or bus or train travel, but local cab is okay. You can also make so they can or cannot get cash back when purchasing, and set a limit on the amount. And I get a text message whenever she uses it. She feels like she has some control, and I know what she is doing. Smiles all around.
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OP has not been back to this post since early Oct.
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NYDIL, Just curious -- have any decisions been made about moving your FIL?
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