I've posted before about in-law care-giving. Aged mother in law, lives in same town.
We are at the tail end of a visit from sister in law from several states away. Sister in law has been here for 3 weeks caring for her mother. A much welcome respite.
It had been discussed, prior to her arrival here on the scene, she would be talking it over with her mother, to try and get her mom to come up to her home, for a stay of maybe a few months.
This, in my opinion, is absolutely essential, as I am expecting twin grand-children, due in about 1 month (if they don't come sooner, as is the case a lot of times with multiples pregnancies). The expectant mother also lives locally here, and has a 4 year old daughter. I will be on that front, helping .. as much as is needed. And not on the front with mother in law and care-giving, and have made that as obvious and apparent as I know how to make it. It would be great if mother in law would agree to go to her daughter's home (several states away) for a period of a few months .. and allow me the latitude to put my energies where I want them to be, on my daughter who will have had a c-section .. and my grand-daughter (4 years old) and new twin babies.
Nothing doing. Mother in law has dug in her heels, and will not hear of it, going to stay with her daughter for any period of time.
What are her reasons?
In mother in law's defense ... her daughter ... I don't even know how to describe it. I will say that when her daughter comes here to visit, she all but breathes for her mother and if she could find a way to do that, she'd do that too. She is the most nervous nelly, never sit down - ever ... worry wart, do everything, all the time .. person that I've ever encountered.
A great example, as I was taking her to the airport yesterday for her departure, . I reached into the fridge to grab myself a bottled water and shut the fridge and turned to walk away, as I've done for all of my 50 plus years living on this earth .. and she said to me, "Oh make sure that fridge shut". WTH???? Like I don't know how to shut a fridge? That's just a small, very small slice of what she is ... how she is.
She is so very hyper-vigilant, seeing to every minute details down to it's finest most minuscule point, fine tooth comb, questioning every point along the way, "should we do thus and so, but maybe if we do thus and so, then such and such will happen, maybe we should do it thus and so .. but then so and so might happen, maybe we shouldn't do thus and so, but do "x" "y" and "z" instead, but if we don't do it that way then ..........", on and on and on and on it goes. And usually in hyper warp speed, as to every single friggin thing.
If her mother moans .. "what's wrong mother?, why did you moan, are you alright?".
Mother: "Yes, I'm fine, I was just sighing out loud".
Sister: "Why did you sigh? Are you hurting, are you sure you're alright, why are you sighing what's the matter?"
Mother: "For God's sake __________________, I was just sighing, .. calm down, I'm fine".
Sister: "Are you sure, .. because if something is wrong you need to tell me".
Mother: "Everything is fine, I'm fine".
Sister: "Are you sure, we did a lot yesterday, did we do too much, maybe we shouldn't of gone to two doctors in one day .. was that too much for you, are you too tired now, maybe we need to move those other doctor appointments so we won't have two in one day, is that too much for you, for one day .. is that why you were sighing .. what's wrong, are you sure you're alright".
Hopefully that kinda gives a little bit of a snapshot of what goes on when sister is in the ring directing things.
So in mother in law's defense.. I do get it, why she wouldn't be chomping at the bit to go to her daughter's home.
BUT ....
The only experience she has with her daughter, in the last years as mother in law has aged and been unable to go anywhere much, has been the daughter coming here, periodically, for periods of about 3 weeks at a stretch. When her daughter comes here, she moves heaven and earth for her mother and then some, and doesn't sit down, doesn't stop .. the WHOLE ENTIRE TIME.
Is there a possibility maybe (as I said to mother in law, when she expressed that isn't happening - talking to me - her going to her daughters .. ever) .. could it be possible that maybe if you would go to where she lives .. she'd be more busy managing her own life in that setting than your's and she would get out of your backside .. and not be as hyper-drive-vigilant as you experience in her, when she's here, could that be possible.
The daughter is retired, lives several states away. Does come here, generally, every few months .. and stays for a period of about 3 weeks at a stretch. I wish I could make a list of everything the daughter did when here this last time, but it would take up the whole character allotment:
or that you can ask that he attend? I realize from what you’ve said of him, he's likely to merely sit there and not say a word. But who knows - having lived it as well, he might just have something to contribute. Just a thought... it would be a nice way to round out the interpersonal dynamics - and confirm your position as a supportive spouse- and not the driver of the bus.
Speaking of being the bus driver...
Do you suppose it’s possible to drive the bus AND be thrown under it - all at the same time?...
Absolutely. If the bus driver doesn't have the decisionmaking power, this is what could happen.
Anxiously awaiting Dorker's meeting report!
One thing that DH and SIL are going to have to come to terms with is that the quality of a facility is often not evident in its decor, or in the appearance of some of the residents.
My mom's NH had its share of spaced out folks who'd had strokes and were shells of people. They were sad to see. Those were the folks who were often seated in wheelchairs around the nursing station so eyes were on them at all times.
The greater number of folks were folks who were engaged in living. Some, like my mom were not particularly sociable but enjoyed people watching. One younger guy was always reading on his laptop, or working on the computer the facility maintained for residents. There were card games, knots of ladies chatting, volunteers and family visiting. And ballgame watching. The decor was rather shabby but the place was spotless. And the laundry was done well and always returned to the correct room. The staff was warm and loving.
It's very sad when a family member is debilitated enough to have to enter a nursing home, when they can no longer be maintained with support by family or paid caregivers.
It made ME sad to visit my mom because SHE was so diminished, not because the facility itself was sad or scary.
I think that DH and SIL could benefit from getting some support ( counselor? SW?) so that they gain some of this self knowledge.
If SIL is going to put off by "decor" and lack of "posh" this process is going to get derailed immediately.
I imagine that MIL will declare almost anyplace unacceptable, but that's pretty much lifelong snobbery, isn't it?
I found it really, really REALLY hard to back away from the "fix it" mentality. It sounds as though Dorker's brother's wife was mired in that and we know that SIL is.
Check out Wubba's post over at the " Things are about to get terrible..." thread and see how a geriatric social worker can help a family work through these issues. I posted it to Dorker's message link a while ago; I hope she reads it and passes it on to DH and SIL.
Something I haven't thought of in years. My ex's great aunt (an RN) owned a NH in California. She had one employee whose ONLY job was to mop from one end of the facilty to the other, all day, every day. If there was an accident, he responded to that, but otherwise, there was a continuous soapy mop on the floor at all times. It's something to look for.
When my brother and I took her to see it for the first time, we asked her after the tour and seeing her purposed room - what did she think? Mom just shook her head. When I asked her what it was she
found objectionable to the place she
replied “It’s a pigsty”.
Ummmm... Hardly. Not even close.
Yeah, I have to agree with Barb. MiL is
not likely to find a room in Buckingham Palace agreeable.
Mom insisted that she was "not as bad" as any of the other residents. (Most of whom were actually higher functioning cognitively than she was.).
Thought about that for a long time and realized that this was a life-long habit, trained into her. Her mom was a formerly upper class lady in NYC, married to a ne'er do well alcoholic. He died tragically, leaving her with 4 children to support and no money.
My mother and her siblings were taught that they were better than anyone else; my mom was only 2 when her dad died, so this message was received quite uncritically.
If MIL's kids can get past the messages that have been drilled into them, there's some hope that they can get a clear-eyed view of what's actually needed here.
Wires crossed somehow on all this and for the life of me, I don't know how that happened.
So .. I get there first . .waiting for SIL and DH to arrive. Announce I'm there to the guest svc desk . and they send out someone .. I can't remember her name . .she introduces herself . and says they will be with us shortly. I explain that my husband and his sister aren't yet here, and I'm early, so no hurry. She then says the following:
"Ok, that's fine, I'll make sure they are readying the patient to bring her down".
Me: "Wait .. wha????...no ..???... no .. this is supposed to be a meeting to discuss possible placement for the patient . and we're not on that page with her .. not yet .. we are wanting to get some feelers here as to direction . but not yet bring her into that fold . no .. I wasn't expecting MIL to be brought into this meeting".
Her: "Oh okay, let me go call and stop them".
Me: "okay, I'll wait, . my husband and his sister should be here shortly".
Soon this same woman comes to retrieve me. I explain that I am still waiting for my husband and his sister, who I know to be in the parking lot on their way ..
She assures they will direct them to the meeting . and invites me to follow her, I did so. Around this corner and so forth.
I get to this room, conference table . seated is a woman there, with a laptop . and another woman across from her with a laptop .. and they both introduce themselves .. one is a SW the other is the nurse for MIL.
I guess she'd now (the SW) been tipped off that we hadn't wanted MIL in attendance at this meeting and says what throws me completely off the rails ...
SW: "Well now without your MIL in attendance, we can't have PT in here to report on her progress .. do you want them part of this . to report her progress? We have to have the patient here to go over that".
(Dumb look on my face, I'm quite sure)
Me: PT? I thought we were here to discuss possible placement for MIL . and needing some direction with all of that . that's the purpose of this meeting, at least to my knowledge.
SW: "Oh well .. no .. this is a Progress Meeting, .. we do this . with all the concerned family and we go over the patient's progress and make recommendations if needed .. that's what we're here to do"
Me: "Oh .. well that's not at all, what we're coming here for".
At that, she sees over my back .. slowly ambling along PT staff .. with MIL .. here they were coming.
She then says (SW) .. "oh I see them coming now, .. did you want me to stop them . we can't cover the PT portion of things if she isn't here/present .. .did you want me to stop them".
O.M.G. What a cluster eff!!!!
How did the wires get so crossed on what it is we all thought this was to be about, .. and what it is THEY thought this meeting was to be about? How did that happen.
At that .. I could see behind .. .MIL who is ambling along ever so slowly . and PT staff with her .. I could see SIL and DH .. who'd now made their way inside.
So I now rush out, . "Hi MIL, so glad to see you, let me grab DH and SIL . I'll be right back". Now sailing past MIL in a blur .. to go tip off SIL and DH .. "hey guys .. I don't have a clue what's happened here .. but somehow these folks think we're here for a *Progress Report* on MIL . and she is in their waiting .. MIL is in there, attending this meeting .. so .. don't ask me .. I don't know . I don't know how this got so effed up .. but that's where this is .. , and their waiting for you guys".
WTH??!?!?!?
So . now the meeting begins with each one introducing themselves .. each of these professionals .. the PT person .. speaks up . that MIL had a bath this morning . a shower . and washed herself successfully (whoa .. that wasn't the case now for months that I've heard) .. I chimed in, "she washed herself ..??....she hasn't been able to do that .. She has been in residence with SIL for months now and SIL has had to assist her, .
I have to go tend my granddaughter now. Will check back in later.
Someone needs to request the OT notes. If they have the standing to do that.
Grand-daughter was here the other day and she was unable to do that . and g'daughter had to assist .. she washed herself?
PT: "Yes, . she did .. she used the shower bench appropriately and when she needed to stand, she did so with the use of the grab bar there .. and washed her bits and bots . and did so successfully .. she stood at the sink this morning and washed her face".
PT (still has the floor): "We are doing PT 2x's daily and OT one time daily and presently working on her stamina and balance .. and seeing improvement there, she walked today about 250 feet .. and so there is improvement seen there".
<<<I was not expecting this .. a Progress Report of a meeting, . nor was I expecting MIL to be in attendance>>
MIL then chiming in .. with her slow .. aged frail .. ability to chime in . "Well I tell ya .. it's like I tell em all here, .. I'll be your least problem . just tell me what to do and I'll do my best to do it... I'm I'm not here to make problems for anyone".
Nurse now weighing in: "the only concerns we are presently seeing is her lack of appetite . and so we are encouraging her that she has to eat .. so that she can gain more energy . she has lost 6 1/2 lbs since arriving here .. a few days ago . so we continue to work on that, .. there is no pain reported, or illness . and so we're all good".
At that there was some discussion about .. (and I think MIL wasn't dialed in, didn't hear it) .. that it's thought MIL would do fine at home with around the clock caregivers .. (nobody weighed in, MIL still sitting there, . and it didn't register with MIL what was just said). At that, . it then turned to discussion on the biz end of things . that at present . her qualification via Medicare would allow her stay until 3/13 . ... beyond that .. if medically necessary there will be a deductible of approximately $160 per day and so there'd be a need to sign consent that is understood.
That brought about questions from both MIL and SIL who were under the impression her supplement would pick that up, which in turn brought response that can be discussed with the biz office, social worker stating that can be true, but she's not aware, . the biz office can better speak to that.
At that, SW then puts papers in front of MIL to sign . and so MIL goes about the slow tedious process of trying to sign her name and I point out to them in saying "MIL do you still struggle to find the letters in your brain to be able to find them, to sign your name". She responds .. "yes Oh GOD YES .. It's a struggle for me anymore, you know my penmanship used to be so good . but anymore, it looks like chicken scratch . .and I struggle so with just trying to find the letter in my brain . if I'm supposed to write an S . I have to think hard about it, now what does an S look like . it takes me forever" (and yes it was taking forever, . 3 sheets she had to sign . .and it took like 5 mins . .not kidding.
At that, the SW explained that MIL and PT can now depart to return to PT .. and we will discuss a couple more things . and MIL I guess assumed that meant we were all leaving . so that then had to be explained to her, that no . she was now leaving with the PT person . and we .. (as in me, DH and SIL) would stay behind for a bit .. and we'd see her in a little while. Getting her to kinda of comprehend that . .took a minute or two .. and she now slowly making her way upright from her seated position to her walker . .and then . .she and PT staff member depart.
Once they left, .. I started: "I'm really suprised to hear that she bathed on her own this morning . that's not something she has been able to do .. is it SIL?, .. (then added) .. in fact, .. I think her ADL's need to be looked at .. as to dressing/bathing, .. her med management .. she doesn't remember to take her meds .. I think there is some cognitive function that needs to be looked at ..
SW: "Well as to washing her hair . as the OT person mentioned .. she reports
She reports that she has a g'daughter that is a beautician and her g'daughter come and does her hair for her.
Me; "Well she does have a g'daughter that does that, but not on any kind of routine basis . that g'daughter has a set of twin babies and a 5 yo . her ability to come and attend to that is sporadic at best. And as to the cognitive function . she's not using that nurse button .. I don't think it's because she's stubborn .. I think it's because it's irrelevant to her in her diminished .. capacity at thinking. Her balance so compromised .. are you all aware she is moving about on her own . without calling for assistance . .and has been advised not to do so . and that she toilets by leaning her head against the wall for balance .. she can't use her arms/hands . as those are needed to pull her pants down .. and so she leans her head against the wall, and all of this without any attendance by staff . she has been advised to summon and doesn't .. is there a way to get some cognitive assessment".
At that SW: We don't do that here . .that you'd need to get through her PCP ... PCP would need to refer to a neuro doc for that .. but .. as I said before .. she would do okay at home . .with around the clock caregiver ..
SIL: "She doesn't have that .. I have been her around the clock c'giver and I can't withstand it any longer ... I am 68 years old a senior myself .. and taking care of a super senior . she gets sick a lot with bouts of diahrea .. and .. she doesn't adequately care for herself with her diet, etc .. she doesn't take her meds without prompt .. I can't do this anymore".
SW: "Does she have any funds to hire around the clock c'givers
SIL: No . in fact, we'd thought we were coming here today to discuss placement and .. some of the ropes to that process . and Medicaid funding . and so forth.
SW: "Well .. I will need to refer you to Betty __________ she is our Medicaid liason . and she can better advise you on that matter .. and .. as I said before . I think she is a candidate for AL .. and would do okay in that setting .. and so . you can discuss some of the direction towards that with Betty and Medicaid and she can better guide that for you, I'll have her get in contact with you.
Me; "AL? You mentioned that before.. .I guess I question that .. I don't have a clear understanding .. I thought AL was mostly for those who are more independent .. and can manage their own meds, manage their time .. manage their own health when they are ill .. no?".
SW: "Well some AL's .. will provide case management and services for that .. that's something you can be attuned to when shopping for AL .. but .. no .. I don't think she would even qualify medically for SNF .. she isn't bad off enough for that .. "
<<At that SIL asked for some clarification as to what she could expect in SNF . vs AL. That was given .. a briefing of sorts>>>
SIL then asking a few questions with regard to .. the whole Medicaid piece vs the fact she does have at present, .. $20K at her disposal . and the SW then chiming in . she'd have to private pay .. and then it would switch to Medicaid pending .. and so some questions there . but at that point . the SW . who was professional about it . and tactful but basically stopped us all .. and explained that our time was up . .she now had another family to meet with as to Progress Reports and so she's sorry but .. if we have any other questions we can call her .. (gave her card to SIL) . and then pretty much that was the end of it .. and a promise to have the Medicaid person reach out to SIL .. and SIL clarifying she'll need to get in touch with the biz office, . .as to that question on any stay . .if necessary .. beyond the 21 days or whatever it is ..
And that was that .. that was the end of it.
We went and had lunch in a cafe there, and talked over some of it (SIl with her voice now hoarser for the talking)
and went to visit MIl and that was that.
over
now - what to do if MIL expects to go home, refuses AL, and SIL refuses to be 7/24 CG any longer.......
MIL not declared incompetent. [INCONTINENT, but not INCOMPETENT]
I think a long hard road ahead. Will the facility release MIL WITHOUT 24/7 caregiver at home?
Or, if AL facilities are recommended, maybe a question that could be asked of the mgmt at these prospective places is how do they go about assessing the patient's needs? Perhaps placement could be done, then cognitive assessment ordered by PCP. Anything but discharging MIL home, imo. The battle for placement will be a lot harder if that happens.
Glad to hear about the referral to the Medicaid liaison and ball rolling there too. Sounds like SIL is starting to accept the fact that she can't continue being her mom's FT caregiver, and that there is no one else to do it.
24/7 caregivers in the home. If SIL can no longer do it (and she can't), who is going to pay for the 24/7 caregivers? How long will MIL's $20,000 last? SHE should be the one to pay the caregivers. And what if MIL fires them?
And there is still the POA elephant in the room. MIL will be able to do whatever she wants as long as no one has decisionmaking authority for her.
One thing is for certain. Make arrangements to go visit your mother in SC so that you are not around on March 13 (although perhaps MIL will pay the co pay for additional days in rehab. Be aware, though, that any additional days may not be for long, as Medicare will keep trying to disqualify her from rehab).
With MIL's Need,,,Team Dorker will be stepping and fetching to the AL at least once a day......LTC seems much more in line here.
Could it also be the "S" word at work here....Showtiming? With the family, MIL is flat out wretched, can't do anything. In front of staff, "powers that be", SW, she is just a sad old lady who is "managing". Without a formal POA, it is going to be a tough road to proper placement..... Argh.
And why did they tell you that they would get her set up for a cognitive assessment if they don’t do that there? This is a huge cluster F. Wow. Are you livid? I am livid for you.
Just wanted to say that your story has helped me so much. My FIL moved out here almost 8 months ago. I was under the impression it was to be closer to his children now that he is retired and to live with my BIL & help them with the huge mortgage they just took on. We all knew he had been having health problems-early stage of cancer that didn’t require treatment but nothing serious was going on as far as we knew. My BIL and his wife had gone out & visited him and nothing was relayed to my husband or SIL about their dad being in bad shape. Fast forward to him coming out 2 months before the actual move and he can hardly walk. His voice is nearly gone. His moves out here and is living with my BIL. My husband has made passing remarks that his dad looks terrible and like he should be in a nursing home. Fast forward to the end of November when he is hospitalized for malnutrition and fluid on his lungs! My BIL and his wife were apparently unaware that he hadn’t been eating. My BIL and his wife are not only extremely lazy but incredibly self-absorbed so I am not at all surprised that he was starving to death in front of their eyes and they didn’t notice. Anyway. Yesterday he was finally transferred to rehab after a 2 month hospital stay. And his kids all seem to agree he needs to go to a nursing home as he cannot take care of himself. At one point it was suggested I become his caregiver and he would come stay with us. I’ve since decided that that WILL NOT happen. I will not and cannot take on that role. So here we are and no one is taking the initiative to do anything! I’m a proactive person. I need to have a plan. I need to know what is going to happen. My husband as I have mentioned is going to have back surgery very soon. As a DIL, I do not want to get involved in any of this. But I also don’t it burdening our family. I don’t know how long he will be in rehab. So here I sit with all these thoughts and anxiety. I want to prevent this situation from causing us any burden. I just wish these people would wake up and either decide.....are we going to be active in dads care and figure out what’s next or are we going to wash our hands with it and let him and the rehab place deal with it all? I see so much of our family in yours dorker. Like you, I’m the one seeing the big picture while they all deny it. My FIL wants all 3 kids involved in anything so anytime there is a meeting, they are all expected to be there. I keep thinking why go? None of you seems to give a damn. Actually think they are oblivious to an extent. It’s a combination of being self-absorbed, not caring and being totally oblivious.
Wires crossed, misinformation. This sounds like SW was prepared for what I know as a Care Plan Meeting.
Anyhow, now you know what the recommendation is, yikes, home with 24hr Care. Not possible. Or AL. AL sounds next to impossible for MIL to manage. I guess the next 2 weeks will confirm or change that recommendation.
Dorker,
I think you have said that in FL Medicaid will cover AL but there is a one year wait list. I hope SIL has not started packing to return home yet.
I hate to say this but the communication breakdown that you guys experienced today is not uncommon in these facilities. It’s been my experience to leave numerous messages but no call returned. You’ve just got to show up ask to visit with who ever and if they are not available set up an appointment for a later date while you are there.
Today was frustrating, yes. But you guys did get some bits of info.
" the doctor" about getting an order for a cog assessment? Which doctor needs to order that?
What about an assessment of her medical viability for AL vs SNF?
I know she is struggling cognitively but, on some level I think she knows she has to do everything asked of her and with flying colors or she is headed to a facility.
If she is accomplishing what the facility says she is this is fixing to get interesting.
MIL may be someone that does well in a facility. Staff fussing over her, PT twice a day, OT once a day, not a lot of down time, lots of human interaction.
I hope one of you has that Medicaid specialist’s name/number. Someone in MIL’s tribe needs to light that up @ the start of office hours tomorrow.
SIL & DH cannot afford to be passive. Literally and figuratively.
MIL is already a year behind the 8-ball with this Medicaid sh*t. And she has roughly 1-2 months private-pay funds at her disposal. Hmmm.
(Like everyone else here, I’m appalled at this rehab’s jack*ss assessment of MIL’s “progress.” They are crafting a story so they can eject MIL at the first opportunity. Get ready.)
MIL needs to be BOTH medically AND financially eligible for NH Medicaid.
She needs a cog work up asap. She needs an INDEPENDENT work up of ADLS. She needs a Medicaid attorney.
Dorker, please try to drive that message home to SIL. And read the PM I sent you from another thread about a family that hired a geriatric SW to guide them through this process with a narc elder with no money.
I was a guardian and conservator for an aunt who had dementia and had broken her knee. She had some money, thankfully or this would have been a nightmare for me.
Anyway, my sister (also guardian) and I were called to the facility for a meeting. Things were very vague. It was obvious they didn't really know how to conduct a meeting or answer questions. Every question we asked was met with "Hmm. I'll need to get back to you on that." Kind of a waste of time.
In the meeting they told us my aunt was progressing nicely with the PT, could be out in a few weeks, able to return to AL. Exactly one week later I'm on my way somewhere and get a phone call from the facility informing me that Medicare has rejected her PT because she cannot put weight on that leg (she had frigging knee surgery). They informed me she would be moved to LTC and that I needed to bring a check for $6000 THAT DAY or I would need to make other arrangements for her! We had been told by her ALF she could not come back there until she could transfer herself from a wheelchair to a chair or bed. Thankfully she had the money and I had the AUTHORITY to write a check on her behalf. I made a U turn and showed up with a check immediately.
That's the kind of crap they pull. I wonder what they would have done had I said "She does not have money and cannot go back to AL and I will NOT take her to my house." Would they just push her to the curb in her wheelchair and tell her she is on her own?
Dorker, if you only do ONE THING, it needs to be to bug the crap out of DH and SIL to get POA from their mom ASAP! They will be powerless to do anything without it. Bet they've never even asked her to sign one "cause it just makes them all so sad."
MIL also needs a thorough MEDICAL workup to document her CHF issues.
Medical documentation of need for SNF, including continued medication non compliance..
Documentation of incapability for ADLS, (and please tell MIL to SHUT UP about how much help she has "at home".)
Hope that the Medicaid liaison at the "posh" rehab is a better facilitator.
Documentation of her cognitive disability.