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:
First chance I've had to post.
Went fine. Dad cried when he got home (seen more tears from him in the last few weeks than ever in my entire life). If you ask MO the tears weren't from gratitude to be home but rather burden that he's now home with a wife who has lost her ever lovin mind. That's how I'd feel.
Dropped him off ... stepsister and stepmom there. Got him unpacked and his things put away.
Then it was off to the grocery store where he gets his rx's to get a handful of rx's filled. 1 hour wait I was told. So I went to a nearby dept store and shopped for some summer tops for myself.
Back to get rx's and 2 of the 5 rx's they were unable to fill.
One of them, it was said, directions were unclear .. they noted they had called the MD for clarification, left a message, no return phone call yet. Suggested I follow through.
Another of the 5 rx's they would need his Medicare Part B card to verify coverage or pay out of pocket @$167.
Took the 3 they had ready ... 1 of those they explained, MD only wrote rx for 15 day supply... they didnt know why. Was BP med .. so ..??,...obviously that one doesn't need to be only a 15 day supply.
Sheesh!
Took what they had ready, headed back to my dads to go retrieve Medicare Part B card to go BACK and get the one they wouldn't fill unless pay out of pocket.
Called on the way to MD at rehab to ask they call pharmacy and clear up whatever is unclear as to directions. Talked to charge nurse. She said she'd get it addressed. Asked why only a 15 day rx of BP med. She said she would ask and call me back.
I got back to deliver the rx's I'd gotten and retrieve from him his Medicare card so I could go back to the store and nurse as well as pharmacist called. Directions now made clear by MD that rx will now be ready if I'd like to come back. The other rx in question.. if I'll bring back Medicare card they'll check to see if it's a covered drug. Nurse called to report directions have been clarified with pharmacist and BP med only written for 15 day supply as they want him to follow up with Cardio doc. He has an appt end of June for Cardio. But obviously 15 day supply wont stretch that far.
So I called Cardio doc .. asked that they send an rx to pharmacy as we'd only been rx'd enough for 15 days, scheduled to see them but not until end of June. They said they'd submit the request.
Back to pharmacy, Medicare card in hand. Now a wait for them to determine if it's a covered drug.
Another hour henceforth... all that cleared up & on my way.
His wife. I dunno.
I saw her last week and she seemed lucid.
Yesterday. WHOA! Out to lunch! Asking the same questions repeatedly .. like ridiculous repetition.
One instance of many. We had lunch and she must've said at least 5 x's .."this is so good, what kind of sandwich is this?" Her daughter after answering it repeatedly "mom its tuna, cant you tell?". Only for her to repeat above process over and over "this is so good, what kind of sandwich is this?". Just shoot me if I had this to contend with every hour of every day. But yet when I saw her last week, she was far more with it. So goes Dementia I suppose.
The above ONLY ONE of much much much exhibited in her asking the same (already answered numerous times) questions.
Her daughter seems to just answer .. benign like, like it's the 1st & only time it's been asked. Dad however, ultimately got impatient and answered with a snap to his tone .. at having to answer repeatedly that which has already been answered more than once. This brought about the step daughter reminding dad "cant snap at her, she doesn't remember she already asked that question"
Hired c'giver arrived and I departed. This after I'd sat with my dad & pill sorter and gone over what pills are what and when to be taken, him obviously clear & comprehending and completely able to do so
To do so for himself going forward. Explained to him the whole debacle as to the BP med and shortage there & what's been done to address it. Clear he understands and can follow up on that piece if needed.
And I left.
Edited to add: this has got to be what living in h377 equates to. It is SO HOT here. Yes I have AC in my car & and its cranked to the hilt .. but still, it is miserably hot and even in the stores .. it's not cool and pleasant more it's just not as miserable as outside. So, in part, why I was absolutely spent once I got home finally. Every day is in the upper 90's and humidity off the chart and the "feels like" is about 103 to 105 and this is what I was out and about in.
Wears you out!
Time to let him settle back in, and hopefully he will realize how important it will be to get his legal ppwk in order very soon, before the other shoe drops, as we know it is just a matter of time.
Uggg, prescriptions! Why does it seem like this is an ongoing issue for most of us, especially when we don't feel good or are having had an exhausting day? It almost certainly gets remedied with the Drs clairification, or the damned "pre-authorization" from our insurance co, but not without the running around and the waiting game, they never seem to disappoint! So sorry you had to go through all that!
Hopefully now you will get the rest of your weekend off from parental duties while he settles in back home. I really hope that the home care folks work out for them, and you can be back to doing the minimal amount of care.
As for folks on here being hyper critical, I wish they would give the old man the benefit of the doubt for a bit, he has shown to be quite independent and responsible in the past, so he should be afforded the opportunity to be so again, even with his Cancer diagnosis. It is a huge blow to have received this kind of thing, and I pray that he can find the strength to make the right decisions going forward for both he and his wife, I am sure he is petrified of what's to come. The "Baker Act" detention is not appropriate in this situation, just my 2 cents.
In fact she even commented at one point "good thing it's time for me to leave otherwise we might make the news tonight .. somebody is gunna die"
Her mom heard that remark .. maybe Dementia folks are real literal and dont pick up on *tongue in cheek/jokes*.
Her mom: what's on the news?"
Stepsister: I was just saying mom .... good thing it's time for me to leave .. otherwise one of us is gunna kill the other" we'd be on the news.
Her mom: well you'd have to kill me I guess, I could never ever do that to you.
This is one of the times stepsister looked at me cross eyed.
I know another time she and I had stepped outside and she asked me what am I now going to do with my time .. now that this is more settled. I answered "gunnna find my normal" she high fived me "me too" she said "the sooner the better"
I haven't called my dads house today and dont intend to nor tomorrow. Maybe I'll give a call Monday or Tuesday. But I'm stepping way back.
I have in fact given him the benefit of the doubt overlooking decades of not having his ducks in a row. But who can plan .. they both go down at the same time .. not with sore throats or stomach bugs but major issues ..both at the same time where all these years they have managed EVERYTHING without calling Dorker. Thus he got the benefit of my involvement in a huge way.
Bit I've said what my expectations are going forward. Now we wait and watch
I dont know, though - I use to get kinda twitchy when things went smoothly. Pharmacy mishaps don’t count - those are almost always a given. But, It usually meant either I missed something or something big was just around the corner. Six years of “waiting for the other shoe” has left me seemingly unable to relax - still.
Clearly, Dorker - you’re not at that
place. I hope you never get there.
Take lots of time to do what YOU want to do this weekend. It’s the best way to keep your boundaries reenforced.
Maybe somewhere down the line, you and K's daughter can sit down and discuss some of the options for K and your dad's care, estate planning issues, and you could find out if she knows anything about POA or if to her knowledge anyone has been designated to act in their stead as far as medical and financial decisions.
Sounds like you had a really exhausting time with all of the prescriptions and helping to get dad settled back in. Hope you are able to relax a but and enjoy the rest of your weekend doing something nice for YOU.
"I have a problem here, I'm wondering if any of you can help me".
Me: "What's going on?".
MIL: "I have an appt on Monday at the eye doc . and they are going to be carting me to that appt., but my hair looks a site .. It hasn't been washed in two weeks . and it looks absolutely awful .. I wonder if any of you have some time to come this way tomorrow, and help me, to get my hair washed and set"
((Salon is closed on weekends, so that's not an option for her))
((She had no way of knowing she was on the phone with me, and DD standing right there, hearing that ... ))
DD chimes in: G'ma, I'll come over tomorrow morning and do that for you".
Me: "Did they not give you a shower today? Wednesdays and Saturdays are your days for Showers . today is a Saturday . did they not come?">
MIL: "No they didn't .. I was going to go ahead and wash my hair if they'd of come . but I can't set my hair, .. I'd of looked like a hooded monkey .. but I would've at least had them wash my hair, but they never came".
DD: "Don't worry about it g'ma .. I'll come tomorrow morning and we'll get it done .. we'll get your hair washed and set for ya, not a problem".
Good thing DD doesn't mind, I would've. I'll visit, bring pleasant little gifts . and then exit. I don't do hair.
And on another note: I had emailed my dad all his upcoming appts., .. as it was me they constantly handed appt cards to, .. not calling his wife . not him . and so I kept track of all that, and in some cases . moved some appts., as some of them were post hospital discharge . and him far too weak, at least initially to be carted around to docs. So I kept track of all that and I had emailed him the list of his upcoming appts. Included in that note: "Any of the appts that you need my transport and/or participation, let me know in advance".
I got his response. Oh the moral dilemma. As we know, he has no intention of sharing with his wife, this cancer dx. Always, forever and ever, temporarily . until he has a clearer picture of the path forward (as we all know, . dependent upon that picture .. he very well . .may not be able to deceive). But whether he intends, or somehow thinks he can continue into infinity that info not shared with his wife .. or maybe temporarily until he has a clearer path forward as to the bigger picture, .. that info not known to me .. what his intentions are.
I only know he asked me not to share that with his wife, .. as he doesn't intend for her to know. I didn't ask any questions, I only cautioned that I didn't think that was a good idea . and dependent upon the outcome it may not be possible. This met from him .. as he glanced out the window at nothingness .. a smirk of sorts .. as in .. "yea .. I know". But nothing more. I voiced MO of that as any approach.
I never intended, still don't, to call her on the phone, . "hey listen up K .. he's being deceptive . he's got some serious issues he's not divulging to you".
That's not my place to do and I never had any intention of doing so.
So of course, I emailed him the list of all his upcoming doc appts., and w/a note I'd need to know if there is expectation for my help, as to transport and/or participation.
He emailed back:
"Yes Dorker, thank you for the note with the doc appts., I've updated my calendar. I will need to rely on you for appts .. and transport, and more importantly . that all important Oncology appt upcoming .. as I will need you as co-conspirator in keeping that info
At keeping that info at bay .. as you know, I don't intend that information be shared".
I haven't responded yet.
My gutt reaction was to blast him . but as with all things .. I seem to be able to be more contemplative and not "react" .. off the cuff. Went to sleep last night with that on my mind. And a "want" to blast him. "I will not be complicit in your deceiving your wife, you want my help for transport and/or participation in sorting thru what's said there, . then don't put me in the position of lying and deceiving your wife, I won't do it".
That was my gutt reaction that I wanted to respond with. But I didn't. I slept on it.
This morning, talking it over with DH . here was his take:
"That's wrong of him to expect that you would act in a role to deceive his wife .. that's flat out wrong of him and I'd tell him so .. maybe he is wanting to get the bigger picture before laying this heavy news at the feet of his wife who will come undone .. at this news . .and she will .. but she has every right to come undone .. and he has to understand that .;. so she'll be all overwrought and upset and so forth . she has every right to be .. that's her husband of 50 plus years . it's wrong of him to keep that from her .. even if she is out of her damn mind .. it's wrong. I would tell him .. .. maybe his intention is to get the bigger picture of the path forward before he shares that info .. and I'd get with him and get some understanding around that piece of it .. if that's his intention then .. yea .. he can count on you .. for transport .. if you're okay with that . but I'd have him understanding that going forward .. depending on the path directed . that you aren't going to be participatory in deception .. at all .. that he can find some one else if that's how he intends to approach it".
In talking it over with my favorite SIL this morning .. (my youngest brother's wife who I love to pieces). Her take: "That's not up to you Dorker .. that's his marriage . .and his life . and his want for privacy as to how he deals with it .. you aren't deceiving anyone, you are honoring what he has asked of you .. and if the chit hits the fan once it's known . and they wanna point fingers are you .. for not being forthcoming .. and allowing him to deceive .. I'd just be saying . "hey I was honoring his request . you take it up with him".
I have a real moral dilemma with being complicit in deception. I know that it's not my place to call her up and blab the info and I won't. But I also am uncomfortable with going there to pick him up for said appt, . knowing damn well what it is we're going to do . and anything being said in my presence . chalking this up to .. "oh he's just got a sore throat . just gonna go have the doc look at it (or whatever other b'chit lie is come up with) .. and me standing there . yup . yep that's it . yep .. gonna go see about that sore throat of his, . .knowing damn well that's not where we're headed out to .
My inclination at this point . is to relay to him the following:
'dad, glad to help where I can as to transport.. however, as I voiced to you previously .. I don't think it's a good idea to keep this from your wife .. it can't end well .. and I have a real moral dilemma being complicit in that. It's my hope that your intentions here are to get some clarity around the bigger picture of that dx before sharing it with her . and that your intention is to do just that . share it with her, once you have a bigger picture and a path forward .. outside of that as any agreement between you and myself, .. I don't really care to partake of any setting that has me a part of deceiving anyone".
So what say you guys?
At least in the short term, what you are taking your dad for are "follow up appointments". Lung, back, radiology, yes? "Oh, it's a follow-up to the lung scans they did, K". That's not telling an untruth; it may not be "the whole truth" but one rarely wants to tell someone with dementia the whole truth, especially when there are so many unknowns. If she asks if it's cancer, you say "they say they saw some atypical cells, still trying to figure out what they are".
I think for right now, I would think of these as therapeutic fiblets to spread some oil on the waters and keep what is Hebrew is called "Shalom Bayit" (peace in the home).
I don't see this as a black and white issue.
My DH had surgery recently, and as he was coming out of anesthesia (a pretty good correlate to having dementia in my mind) he asked what the doc told me after the surgery.
Did I tell him that he was going to need a third surgery (the first one was unsuccessful at fixing the problem; this was #2)?
No, I didn't. I didn't say "you'll never need to do this again", but I said "the doc said it went fine (which IS what he said) and that you get to go home tonight".
So, technically, it's a lie of omission.
Years ago (like 1962) there was an organization called Cancer Care that would provide extra support for cancer patients living at home. My poor mom was taking care of us two little kids and her MIL (my Nana) who was dying of advanced breast cancer. Nana was very excitable (in retrospect, probably bipolar). The Cancer Care people would only provide help if they were allowed to tell the patient that they had cancer (these were the days when the word was NOT uttered). My parents declined the extra help because they knew it would cause Nana no end of unrest; they did this to THEIR detriment in order to be kind to a dying, not so old lady.
Lots has changed. But right now, I wouldn't die on the hill of demanding that your dad tell K before anyone knows the whole picture. Kick this decision down the road until you have a prognosis and a treatment plan.
That being said, you need to keep in mind that your dad has a long history of deceit and "privacy". Keep your radar and your boundaries up.
I also, oddly, agree with DH. You need to be clear on what he can and cannot expect from you. You can educate your dad on how to make this about K and her well-being and what you will do to further that end... co-conspirator, Dorker is not;)
Listening to all of this with your dad has tugged at my heart a bit. You are in a rough position with him. He wasn’t there when you were younger, but he has been self-sufficient up until this point. He doesn’t cause great trouble in your life (now that you are older), but he doesn’t help it either. This alone is a very odd dynamic for these boards and for families in general. One of my parents was like this as well. Checked-out (to the point of neglect as a child), but pleasant enough and non-invasive as an adult. In my experience, the checked-out part allows you to box them out for years, to the extent that they can’t hurt you. Until something like this happens and all of that crap in the box (and accompanying pain) resurfaces. It is especially challenging with the father/daughter dynamic. I don’t think I know a girl - no matter their personality, inner strength, etc. - that doesn’t, in the end and on some level, want their dad’s unconditional love and approval.
If none of this applies, ignore me. But, I would imagine that as this started, it felt good to have Dad rely on you because it shows that trust and love that you didn’t get from him before. And if he is saying things that lift you (you are smart, capable, handle this so much better than other people), it makes you maybe want more of that because there was such a dearth if it as you were growing up. Most of this isn’t conscious, it sits below the surface and makes mischief with your emotions.
My take on that is that you may want to think through those feelings as you go forward here. It will help you guard your heart (you have had enough to hurt it lately, lol) if and when you need to, while giving you clarity on what type of relationship going forward...
1) you want with him... since he has been absent/not part of your day to day for so many years, you may be retaining an old “film” of something you wanted from him when you were young. Going into yourself a little and updating that film can be helpful.
2) is reasonable to expect from him... your dad may have grown over the years, but it kind of sounds (again from someone who doesn’t know any of you at all in real life) like he is still him, no great break throughs, no measurable remorse for past wrongs, etc. He never purposely decided to turn away from self to give to the other, so to speak. As a sister in Christ, I think you will probably know what I mean when I say that. There is a maturity, a conscious soul move that doesn’t seem to have occurred in him. So, he likely won’t ever be the father that your heart needs now. He can be more of a friend than a dad. After I shifted my own definition of what I could expect from my parents, it helped me immeasurably. I could enjoy them more, but they couldn’t really hurt me anymore. It’s like a reality check for your soft underbelly:)
He has his marbles as far as anyone can tell, but he is getting weaker and has a wife with at least some level of dementia.
Without knowing you, him, and true exposure to the family dynamic, it is hard to really get a picture of his motivations. I would guess that, like most people, they are mixed.
(Cont)
DH is right that your dad is laying this at your feet. Your dad wants someone to tell him what he is doing is right, and he wants someone that will help him bear the brunt of it if it doesn’t end well. You have to decide what you are comfortable with. If it were me, the information gathering time is a valid delay in telling someone with dementia. I would absolutely not agree if K was in her right mind, even if she were high strung. She is still his wife. But, again, this is what is best for K, not your dad. It sounds like that is how you are approaching it, so good on you. And it is a mercy to refrain from scaring her to death until you actually know something.
Then, you can decide how to best handle it for her peace of mind. That may entail him telling her once and never speaking of it again if she forgets. Or it may mean dancing around it. Or... ? Many of Barb’s excellent points would be useful.
One thing that really stood out to me is your dad’s word choices. When I am dealing with in cg’ing for my brother (who is one of those sick people that is almost toxic to everyone around him and was before he was sick) is the language used by someone who has less than ideal regard for others...
”I will need to rely on you...” This isn’t someone who is acknowledging that they are asking for a big favor. This is someone who doesn’t want to ask, they want to tell. I would be on the lookout for little things like that with him. Yes, you offered. But someone who actually values your time would use different language. You know, like “please” and “would you” and “I will work around your schedule since you are so kind to take your valuable time to help me.” :D
I know that sounds like it is a trivial matter and no big deal, but it goes back to patterning, behavior, habit, gratitude... how his heart operates toward you. I’d maybe keep that in mind going forward. It will be a good reinforcement for you as you continue to set boundaries.
Language is powerful. Recognizing language that is being used, consciously or unconsciously, to control you is a good source of strength... a tool for your journey, so to speak.
One more thing, hopefully on more positive note, this is actually a really good time for you and DH to come back together. Laugh together and unite over your crazy parents. Let him defend you and your honor and allow that defense to build up your feelings for him. This battle has shifted in a GOOD way... it is now you and DH, somewhat united, against the hardships of other people’s old age. You guys DO have a future... a good one ahead of you. This can be a time of healing.
Again, wishing you well. You really have come a very, very long way, and I am very happy for you that, even though it is a hard time you couldn’t have anticipated, you are being so thoughtful and realizing that none of it is an emergency. You can answer things in your own time, agree or not agree to take something on, and choose to intentionally ignore when you need to.
More for me to mentally digest... and comment upon - after Rainman digests his oatmeal.
I suppose part of it is the ethics and morals involved. But a big part is that I just don’t have the patience, energy or memory to keep track of what I might have said. The true is just easier, I think.
EXCEPT - when dealing with a Nagging, Nervous Nelly. Who just happens to be someone who will spin out even on a good day - given the slightest bump in her need to control. So - a Nagging, Nervous, Control Freak Nelly - with dementia? Forget about it!
I get where dad is coming from. He’s got plenty to think about, digest and decide. I imagine dad even believes he is doing K a kindness. Maybe he is. If K was mentally healthy - I’d say no. But if K were mentally healthy, dad likely wouldn’t be able to get away with it. OR maybe he would. Dad has a long history of deceit. Lots of practice. Perhaps dad is just falling back into his comfort zone.
Regardless. It’s dads place to tell or not tell K of his diagnosis. Not Dorkers. BUT. Now dad is “relying” on Dorker. For rides to appointments and in helping him to deceive.
Again - what’s a girl to do?
If it were me - I’d tell dad: “I won’t bring it up - but if I’m asked - I won’t lie either. So dad - if that is a position you can’t live with (oops, poor choice of words) if that’s something that makes you uncomfortable - here’s a couple of phone numbers for you. Uber. Yellow Cab. The Cancer Society of XYZ. Maybe they’ll be a better choice for your rides to your doctors appointments”.
What about StepSis? What level of *need to know* is she?
Has dad returned to smoking?
It makes sense to me not to tell K at this point. I say that only because it makes everyone’s life easier for her not to be bouncing off the walls even more than usual.
And the steps forward will soon be revealed.
Since she has had a recent and significant heart event there is also that to consider. But somehow it feels that the secrets are not for K but really all about Dad’s M. O.
-not to say that the secrets couldn’t be considerate given Ks condition...
Perhaps you could take a wait and see stance at this point. Get the follow up appointments done and have a game plan going forward then see where you stand.
Dad and K will be a little stronger. StepSis will be a bit rested and you will have had a moment to catch your breath.
You may be all he has going for him right now. Right, wrong or indifferent.
Your message could be a middle ground.
“I have you for now and I’ll counsel you after the fallout. But Dad, this can’t be a long term solution for you or me”.
Do choose your on words carefully to set the stage for your chosen level of involvement. It can serve as a reminder that he can’t just “kick this down the road” indefinitely.
oh, and I know he doesn’t believe that he needs anyone else’s counsel. Just a little boundary.
Basically explaining to him that I'm not comfortable, long term, in deceiving his wife. That it's my hope he is buying time, to get clarity on the bigger picture and path forward, before sharing that daunting news, which I can understand. But that if he hasn't any plan to share this information, I won't be comfortable being part of any scene that has me complicit in deception and lies.
Will wait to see what his response is. Hopefully . it's like I said, he just needs more clarity and had every intention of sharing that news with his wife .. once it's all clearer. If not .. his decision, but also my decision to not partake of that scene. He can have his c'giver haul him and swear her to secrecy, if he's able to get that achieved. I don't want to be a part of that.
And on the MIL front, huge dust up there.
DD had gone to do MIL's hair there today. The story goes .. chitapalooza hit .. this time at 5 AM .. (God only knows what hour of day or night chitapalooza rear's it's ugly head and how frequently). So MIL called for help, needing a Depends change, diaper change, not sure.
It's said the CNA came . and I can't imagine what it is that MIL said (she says she said nothing to set this all in motion) .. but .. I guess to hear it told, .. the CNA went about postal .. ranting and raving . and fussing at MIL, .. "Why would you say that's all we do is change chitted up Depends, we do lots and lots of things, other than that! .. and ranted and raved and fussed and was harsh with MIL .. and then man-handled her, changing and cleaning her up .. chatty cathy witness to this. MIL asked the CNA for her name and was told by CNA "I"m not giving it to you", as she finished her job and marched out after her tirade.
I don't know what it is that MIL said to her, to set in motion this tirade .. maybe nothing . if you believe MIL's end of things . that's the case, . nothing she said .. set all this in motion . she cannot for the life of her, imagine what got all over the CNA . that she went into this rage.
(In the end, .. I can't imagine anything anyone would say that would warrant such . it's unprofessional .. and should be dealt with).
I guess in the end, MIL did complain to the DON .. and chatty cathy was witness as to what had transpired, and a report is being filed .. and it's being investigated.
I'm trying to envision what must've happened.
I wouldn’t tell stepsister anything to get her all up in the air trying to make sure that everything was done the way she wants it instead of the way Dorker’s dad wants it. The way K was on “repeat” over a “tuna sandwich” I can’t imagine that she has the mental capacity to handle her husband of 50 yrs has cancer. It takes a very strong healthy person to be with someone with dementia 24/7. I am not at all sure that he will be able to withstand this constant repeating of everything. My dad lived with me and he asked me everyday at least 20 times what the name of his doctor was!
And that was only the beginning!!! It was like Groundhog
Day for the 16 months he lived with me. It will drive a strong
healthy person insane and Dorker’s dad is sick and may get a lot sicker before he gets better. He really needs to get her
settled somewhere that she can be taken care of so he can at least give trying to get healthy a good shot.
Take it from someone that was caregiving while also sick.
It’s not easy! Good luck to everyone involved!
YB & BB are also aware of the cancer dx. I had not (until yesterday) brought YB up to date that dad doesn't intend to share that info.
Texted YB yesterday. No response from him. Nothing unusual. No worry he or BB will spill the beans. They rarely come around and call just as rarely.
and
"You need to be clear on what he can and cannot expect from you."
I think that somewhere, Dorker, you wrote about asking (or going to ask?) your father what his expectations are of you. Have you done so? If so, what was his reply?
Personally, I wouldn't be asking him, but rather telling him what you are willing to do for him. If there's a caregiver who will be coming in a few times a week for a few hours, that will be the most time one will ever be there. He won't get more caregiving coverage, because he doesn't want to upset K.
I think he is going to rely on you more and more. It already looks like you will be his medical transportation service from now on. Are you okay with that? There isn't (and won't be) a caregiver there enough hours for that to be a viable alternative.
As far as YB and BB not coming over the weekend, well, I really don't see a problem with that. Perhaps YB doesn't want to give the same amount of time and attention to your father. Considering your father's neglect of the two of you when you were young, that is very understandable. Plus, since you have jumped in (to me) in such a big way, maybe he figures that you are handling it, so that means he doesn't have to get involved.
We should take bets on whether or not your father ever does the POA/HCPOA/getting his estate in order. I'm betting not.
I get the moral situation for you. I don’t like lies and deception. I was glad to read Stepsister knows about the Cancer Dx.
I think waiting until after the PET Scan to share this news with K would be advisable.
It is obvious Ks brain is broken (tuna sandwich). The Cancer Dx News could become the tuna sandwich conversation. The same conversation over and over with whoever is around unless K forgets this info.
If the plan is to share this info with K either K is going to need meds to calm her down or everyone else in the household are going to need meds to deal with K.
After the Petscan, Dx, prognosis, and plan to treat or not, I think it might be a good idea for you, Dad, and Stepsister to make a group decision regarding whether to share the news with K and when.
Another persons opinion I would add to this equation is Ks Dr. I would not be surprised if Dementia or Cognitive Decline has been mentioned in her Drs notes or chart for several years.
If Stepsister has any relationship with Ks Dr now might be a good time to contact him for his opinion how to proceed with K. Whether or when to share this news with her and meds for anxiety for her. I’m throwing this out there knowing no one other than your Dad has probably accompanied K to her Dr given their history of not sharing their private matters.
Your father's information is confidential. Your attitude when you are speaking to anybody else whom you do not know to be authorised to discuss it should be that of a person who does not have the information - you pretend to yourself that you know nothing. You must not be responsible for "leaking" the information, but neither are you responsible for any problems arising for anyone's being kept in ignorance.
I think K will go ape if she finds this out from someone else, but I also suspect that it is easier for your Dad if someone else tells her and she goes ape than it would be for him to tell her himself. Then he all he has to do is blame her for going ape, and blame somebody else for telling her; which is a lot less effort than having to find the right moment and the right words.
This sounds harsh and critical, I know, but that's not what I mean. His approach is so common that's it almost normal. Lots and lots of us would rather stab ourselves in the eye than initiate a difficult conversation.
Its a sticky situation. Telling. Not telling. Being a partner in deceit. Insisting on full disclosure. Lies or “therapeutic fiblets”...
Is a lie okay if it is a “white lie” - told for someone’s own good? To “spare them” pain and anxiety? I do believe that most people would agree - yes, that on occasion - when told for someone’s own good it’s okay to tell the proverbial “white lie” or “fiblet”.
In this situation, it seems appropriate to ask - for who’s “own good” is this lie being told?
Dads? Given the seriousness of a potential metastatic cancer, perhaps that’s something that can surely be allowed? If it were any one of us - might we ask for this same latitude? Hard to say unless one is actually staring down this barrel, I think.
K’s own good? Here’s a woman who in the best of her days - has been told of being a high-strung, controlling individual. This is the woman who couldn’t leave her husband’s hospital bedside long enough to drive home and pick up a pair of pajamas - in order to further her hospital bedside sitting into a 24 hour, round the clock vigil - for a fairly routine back surgery, no less. This woman is now recovering from heart bypass surgery, herself. No small feat. But, the real concern regarding her own good - is now her deteriorating brain and diminishing mental capacity. K, now unable to recognize nor remember for mere minutes - the contents of her tuna sandwich. How on earth can anyone expect this woman to deal with her husband’s cancer diagnosis. Is that even possible? Or will K forget and have to be told of the devastating diagnosis over and over again. On the other hand - perhaps K might remember her husband’s cancer diagnosis, maybe even understand the potential seriousness of it... leaving for many more opportunities to take midnight strolls through hospital corridors in nothing but a men’s undershirt. Okay - that one is unlikely to actually reoccur. But just who is going to stop K’s attempts to sit vigil? Her bi-polar daughter, who has a history of “getting gone” after arguing with her mother? Dorker, who has built and hard earned her boundaries in order to protect her own well-being? The paid caregiver, perhaps? Who even has the legal authority to stop K from doing anything? Just one of a few big mysteries in this whole situatio - who - if anyone, outside of K and dad themselves - has any legal authority to do anything about anything in this sad and complicated situation?
Perhaps, lying to K isn’t as bad- as deceiving - as it appears on the surface?
Then, when does the lying stop, if ever? Can it be a simple as a one time lie or will it being a snowballing of lies - gathering momentum as lying has a way of doing?
“O, what a tangled web we weave when first we practise to deceive”...
But does that apply when dementia is involved?
O! what a tangled web we weave when first we practise to deceive -
But when we've practised quite a while how vastly we improve our style.
People tend to develop the habits that suit them, and this is the m.o. that's always suited him, and if K isn't used to it by now then, well, she should of dealt with it before.
And, deceit? Meh, kind of. Does she have a right to know? No, bluntly. She doesn't. It may not say much for a marriage if one spouse doesn't trust the other with this kind of news, but that's a different question.
The dementia seems to be a moot point, but in any case it's not like K is going to be in a position of taking active, hands-on responsibility for anything; so again, she doesn't either have a need to know, as in a Need To Know. What impact will this have on her own decisions? It's not like she's about to back him for president or turn down better options she might have picked if she'd known. She wouldn't do anything differently even if she did already know about this.
What's left is that she will feel hurt and angry to have been excluded. With that I totally sympathise, because it drives me up the WALL when people haven't told me things, especially when it's "because we didn't want to worry you." It is very hurtful and it is very rejecting, because it means you got ruled out as a source of sympathy and support. Well thanks a bunch.
But all of this is about the trouble Dad is laying up for himself. Dorker can advise, she can challenge, she can disagree. The one thing that is crystal is that this is not Dorker's secret* to tell and Dorker is not a partner in anything, deceit or not. Key phrase if anyone starts in with reproaches later on:
Why didn't you tell me?
Not for me to tell.
*Secret, huh. Not for long. Not when that many people already know about it. Watch this space - !
Been out of the loop for a few days--stuff really HAPPENS in your life!
I don't personally see how the cancer dx can be kept a secret for very long...SOMEBODY is going to say something w/o thinking ahead and it's going to blow sky high.
welp--that is one way to find out a nasty dx. I hope your dad has planned what he will say and do should this happens.
You're wise to step away as much as possible. You haven't been involved in the day to day for dad for years, and it's almost serendipitous that you got pulled into this mess now.
As far as MIL:
OK, she has an episode of chitapalooza an hour before shift change, CNA in question has been on her feet for 12 hours. She's tired. Almost w/o question, MIL was snippy and rude to her. I imagine she has a reputation in the NH. And I imagine it's not good.
CNA shows up--(who knows how badly covered in chit MIL is, but I feel for the CNA who has a patient who is a PITA, literally---and as soon as she enters the room, MIL starts haranguing her about the lack of care, slow response time, etc. Chatty Cathy may be 'there', but she isn't the most reliable witness.
Cleaning up MIL after her blowouts has to be so disheartening. It's sort of like baby pooping themselves awake and you were hoping for another hour of sleep--you get up and handle it, b/c that's what you DO, but even with a baby--there's a level of "are you kidding me?"
With and adult---1000xs worse. MIL is likely just being horrible about the care, and she picks on the CNA to complain? CNA's do all the grunt work and get almost all the complaints. To have someone you are ACTIVELY caring for complain about you--I'd have cried. She was right not to give her name. It'll come out anyway.
Your MIL has not had one epiphany about how nicer behavior brings better care (and it's just more decent, in the first place)...she's still barking orders and bitchin and moanin.
She should be everlastingly grateful that someone is there to clean her up.
I realize it's getting the cart way out ahead of the horse, all the scenarios one can envision of how this plays out once the info is outed.
In the end I am not comfortable standing there with egg on my face as to the findings now out there and implication I was part of hiding that fact. Not at all anywhere I want to find myself having to duck & dodge and justify or point fingers elsewhere etc.
It's not even, for me, any specific allegiance to K
It's for my own hide, and what hoopla falls in it all, and just how much do I wish to weather once the bomb goes off as to this saga shes been left out of.
Yes very much apparent it's a long standing pattern in them. Hide/divert, private .. always very private. Apparently even between the 2 of them and their marital union.
Fine by me. Who am I to say how they run their lives. Obviously whatever their secrecy patterns are, it's worked. 50 plus years.
But it's not ok that I be asked to be co-conspirator to it. That's not ok with me. So I spoke up. Setting expectations and boundaries where I limit my involvement.
I do think, knowing these two people ...my dads motivation is indeed multi faceted.
First & foremost, he doesnt wanna bunch of noise coming from her peanut gallery and in her case, likely repeats of the same questions over and over, already answered numerous times. I get that! Really do. It would be maddening even to those wholly healthy and strong & fit, dad is not.
I also think some of his motivation is to shield her ... she who has her own health compromises at present and of a very excitable (even on years past) nature.
I get it, what hes contending with. I do.
But... you have to also weigh "just what allegiance do I owe either one of them". Not a helluva lot.
Expect me to weather that storm? No, I think not. Better I just set a boundary where my comfort level ends and the problems in your world extend.
Ive told him if it's his plan to keep her in the dark as to further clarity and the prognosis forward, I can get behind that. But dont wish to be part of continuing receipt once that path is known.
Yes she may very well need to be tranquilized to make her calmer. I concur 1k%.
Not in my scope, her well being or lack thereof.
Dont wish it to be, in my scope.
Look there are times she is calmer and seemingly more lucid. The week prior as example when I'd gone there to pick up mail belonging to my dad. She was anything but lucid the day he was brought home.
Im sure that, to her, a stressful time ... one that upended her mental stability. Understandable.
Im not there on site dealing with K nor do I wish to be. Dad certainly knows far more about her well being or not, day in and day out. Ill equipped now, himself ill, to stand and wage that battle. All the more reason when I say to him ... she needs to be in a memory care unit.... listen/dont listen. Up to him. But life battles (and boy is this a serious one) are gunna crop up. So deal with her, in the home, not wanting to uproot her from familiar surroundings and all that pretty nice sounds good stuff. But its gunna be anything but pretty.
I want no part in what would appear even to someone not all that rational at times, as deceipt.
No thank you.
Other people may blame you, and accuse you, and say reproachful things, unfortunately, but they will be wrong to do so; and, besides, what do you care if they do? Do not get tangled up in this.
But .. at some point, as we all know, the c'giving role consumed my life . and I began to then try to set boudaries .. "this isn't working any longer, . she needs more care than one person can deliver .. ".
All to be ignored.
Better at this juncture, that I say at the outset . .and not stumble along having not spoken up as to my own comfort level . .and my own expectations and boundaries .. and then not speak up . .and find myself henceforth a few months, carting to lied about cancer treatment sites . .and lie about the fact he's at home vomitting and run down . and weakened .. and stand there with a 'gee, can't imagine what's going on with him .. sorry bout that" (all while I know damn well what's going on).
Nope .. just stay away from it.
I will, . if that's what he wishes . .allow the latitude that he be given some time .. to visit oncologist, .. get PET scan . bigger/broader/clearer vision as to prognosis and path forward . and I'll go along with not saying a word .. for the above, and the above only.
I'm not forcing his hand . in making him divulge info he doesn't wish to do so .. if that's the path he takes. I am simply bowing out .. if that's the path he wishes as his approach to it all and his wife and her knowledge of the above.
I'm not comfortable with it, it isn't mine to own . what it is he does or doesn't do .. but it's also not mine to step into a path of an oncoming freight train of reality when it hits .. and my duplicity in having been a part of a cover up.
Certainly clear and present it's not my place to call K on the phone .. and ring her up with this news .. and that will NOT HAPPEN. On that, he can count on me. It's not my place and I won't be doing so, ever. If she ever gets word of all this mess . it will not have come from me, he can count on that.
I don't mind helping him .. transport to pulmonogy .. transport to cardio .. etc etc. I'll do so, especially since I haven't heard from him the whole line I heard so many times on the MIL front, .. "oh now I'll be fine here, don't worry with me, and don't send anyone to my door" (heard that til I could puke .. at my insistence she get more help to the front lines). Dad hasn't denied help is needed, and has in fact, been agreeable to same.
Thus, I'm not on the front .. going there . to see to all the minutia that is part of a scene for c'giving ..
I will "help" with transport .. and/or participation with doc visits .. upcoming . and even act with silence on the oncology piece ..............
UNTIL ...............................
There is clearer path. At that point, he can speak up and make his wife aware .. if he expects my involvement. Or he can find other means to get himself to whatever tx's are recommended. I won't be in it .. don't care to be a part of deception.
Some might try to define that, the approach I am taking, . .that I'm forcing his hand, to make him tell his wife what he otherwise might wish to keep from her.
I don't define it that way. I define it that I have the right to bow out .. and not put myself in that predicament. If he so chooses that as his path . he can see to dealing with it, however he sees fit .. without my involvement. It's really just that simple.
And no, I just don't have the stomach and the backbone to deal with the withering storm that would rain down on me, for having acted in any role to deceive .. and it would .. with a fury from H377. I don't have the allegiance to this whole thing to weather that . nor the backbone to care to w/stand it.
I really don't think in the end . that it's all that pivotal a point in this whole thing. My dad should be damn glad he has me, in any capacity at all, .. and if I have reservations about any of it, he should sit up and