Separating Parents in AL - How to handle the physical move itself?
Suggestions for Thursday's move? We have to:
- Tell our mother (stage 6a/6b with anosognosia) we have decided that she and Daddy need separate rooms in order to receive the care they each need
- Respond to her confusion, frustration, fear, and anger (her symptoms manifest with great anger)
- Support our dad (who already knows this is coming and is in agreement that it is best)
- Physically move their furniture and personal items from one shared studio apartment into 2 separate rooms
We have written our script for how we will say things.
We have set a 10-minute time limit for her to yell at us before we begin moving the furniture.
We think it's probably best for Daddy to stay with her (making them allies), in some other location while we handle the actual move (so we are the bad cops to his good cop). But we worry about how hard she will be on him if it's just the two of them sitting in the lobby for a couple of hours while we make it all happen.
We feel utterly overwhelmed! We know this will be so hard for her, but we have no doubt that it is past-time and necessary. We just want to carry out this hard thing with as much compassion as possible, adding no harm to someone who is already so broken.
Any suggestions for us?
Here are some possible plans we have considered, as well as some more context if it would be helpful.
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POSSIBLE PLANS:
12:45 - My husband and I bring over Daddy's new stuff (bed frame, mattress, recliner, hamper, and some small stuff), and put things together in his new room.
1:30 - My sister and her husband arrive. We sisters will go together to my folks' apartment and tell them we believe this is best for both of them and will be moving things into two rooms now.
But then what???
We can't have her sitting there in the midst of the chaos. We know that's bad for moving and bad for dementia.
So we're tossing around various ideas and would appreciate anyone's wisdom:
1. She and Daddy need to stay together, we think. He needs to be out of the chaos of the physical move, anyway, or he'll try to help with things that he cannot safely carry. Plus, we want her to focus her anger on us as the bad cops, not him. He feels very strongly that he must never lie to her, but he is willing to honestly say that we girls made this decision in caring for both of them, and that he has decided not to fight us on it. So we want to ally the two of them as much as we can. We don't want her to feel singled out and attacked.
2. But that would place the burden of her frustration and anger squarely on his shoulders, so maybe bring in a trusted friend? We know of two good friends who might be available to come and spend an hour or two with them, trying to help ease Mother's confusion and big emotions.
3. Encourage them to go upstairs for the community ice cream social at 2:00. We're pretty sure she will refuse, but they need to go somewhere, and that would offer some distraction.
4. Ask a friend (if one is available) to take them out to Dairy Queen, a place they have always loved to go. We are afraid for Daddy to take her out and drive somewhere alone when both of them are very emotional and stressed. But maybe with a friend as chauffeur and aide?
5. We sisters split up, and my sister staying with them, trying to distract and comfort, while I work with the guys to move the stuff.
6. Some other approach altogether?
Final question: My sister has concerns that just moving their stuff WHILE they are out somewhere and THEN telling them when they get back would be too sudden, too much of a surprise. But we also know that what we've read in support forums often suggests that approach for someone who is resistant to moving.
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CONTEXT: My parents have been in a shared apartment in AL for a year and a half. My mom (85) is stage 6a/6b with anosognosia - cannot dress without assistance, refuses to bathe and brush teeth, with some moments of incontinence but mostly independent toileting. My dad (90) is cognitively sound and engaged with life, but has a long history of heart disease.
My sister and I have seen his health declining as the stress of caring for Mother wears him down. She has remained furious that they moved into AL at all, and will not allow the aides to come in to help her with tasks. If my dad goes out for more than an hour or so, she becomes profoundly agitated. Her whole sense of safety and well-being has become wrapped up in him. He is conflict avoidant and struggles to maintain any healthy boundaries for himself.
Mother is not quite ready for the move to the MC wing yet, but it is probable within a year. With the help of their doctor and the AL director, we have decided they need to live in two separate rooms on different floors. Mother needs to be forced to form some relationships with professional caregivers, and Daddy has to be allowed to rest, as the responsibilities of caregiving are exhausting him. On Thursday, we will be moving them.
Daddy knows about this and is in 100% agreement with the plan. We have spent so long trying to find ways to support and meet their needs, but he has come to realize that as long as he is in the room, she will refuse help from everyone else (even us girls).
Comments
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Welcome to the forum. Very complicated situation but also very complicated plan. Not sure why you think a move to MC is inappropriate. If it were me I'd want to make one move for her, not two.
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I agree with M1. It sounds to me like she is at a point where MC woukd be appropriate. It would also be the best way to ensure that she actually does start depending on the staff rather than your dad / due to the locked door. She’s going to start looking for your dad and therefore start wandering when she can’t find him. There’s also the fact that your dad has been scaffolding her. The true extent of her care needs are going to become apparent once you separate them. You are likely going to have to move her to MC sooner than you think.
Regardless of whether you move her once or twice / do not tell her until afterwards. Let her enjoy the ice cream social or Dairy Queen. Don’t ruin everyone else’s day by sending an angry PWD into a social outing. .
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In earlier days, we would have tried to get my mom on board somehow, even if it meant a few adjustments to the truth. As time went on, we did things more like you are doing - no real prep, just "here's what's happening today." That seems to work best for my partner, who also defaults to anger in times of confusion or stress. Where is the staff during all of this? They need to be your allies. Can you craft the explanation to blame the facility somehow - the shared room needs renovation? Plumbing repairs? If your mom believes it's her fault somehow, she'll be more upset, I would think.
BTW, i vote for Dairy Queen in another town, get all the stuff moved while they're gone. Will your parents continue to meet for meals?
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Thanks for the welcome and the thoughts. The decision about MC was not really ours, but based on the eval of the team. She has sometimes several pretty lucid days in a row, needing assistance, but not terribly confused. Most of their MC residents are more significantly impaired, particularly in regard to conversation, and they think she will be best served in AL at a high level for now. Our original request (my sister's and mine) was for a plan to move her to MC.
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Thank you for this helpful insight. She has never been a wanderer because she is very sedentary and apathetic, wanting to do nothing but sit in her recliner most of the day in spite of everyone's efforts to engage her. But you are right that she may very well start looking for Daddy now. "Scaffolding" is a new term for me, and thank you for it! That's EXACTLY what it is. Yes, we have no doubt that her needs will become more apparent with him out of the space. Staff will be watching for her to start wandering, for sure.
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I'm shocked they aren't recommending Memory Care if she is actually stage 6. They might change their tune real fast once she is alone, she likely won't function the same without her spouse. If she isn't allowing staff in to help her with ADLs that will get hard fast. She may need some medication to tamp down the agitation and anger. I'd gear up some therapeutic fibs on the move. if her loop is short enough that she won't even remember the conversation where you tell her about the move, I'd skip it then. Have someone take her on an outing with dad and the rest of you work on the move. Call it temporary. Dad needs some extra care and rehab, and then he will return when the doctor clears him to or similar. Say whatever keeps the peace. Hugs, it's going to be some rough days ahead for all of you.
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I am glad you are being proactive regarding your dad's needs. So often in a couple with where there is one person with dementia, the caregiver's needs aren't a part of the equation much less dealt with.
Your sister is assuming your mom can process this change if given time. I think your sister is a little delusional. Your sense of the situation seems spot-on. The element of surprise is your friend here. Use it to your advantage.
What I would do:
Good friend stops by to visit and suggests the Dairy Queen outing— "their treat". Maybe a little scenic drive to give your moving crew a little wiggle room.
Complete the moves.
Loop a staff member onto the plan which is— meeting mom and dad in the lobby with sisters and administrator/DON to share news that they need to move temporarily to another room while the AC/water shut-off/bug infestation is managed. Take both to mom's room and then spirit dad away to his own saying they didn't have a double available so they'll each have their own until the repair is made. Rinse and repeat.
I suspect the change along with the lack of dad's scaffolding will result in mom moving to MC within a month. I hope your aching muscles have time to recover.
HB4 -
I appreciate your comment! My dad (a retired professor) forever wants to try to explain things and prepare her for doctor's appointments and such, and we have worked hard with him for the last 3 months to stop doing that and just speak simply. She has declined past the point that any of that is helpful. All "prep" does is cause her to start the anxiety spiral sooner, and to begin the arguing sooner. That's an interesting thought about being careful to keep this from being "her fault" in any way. Our script explains it in terms of Daddy's advanced age and heart condition, that he needs extra rest, and that the confusion she feels means he can't always find the energy to help her. But we might want to weave staff/facility stuff in there as well…
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I love your planning! I would love a sibling that puts that much effort into planning. My moms move to AL was a mess. My brother thought mom could handle all the packing herself (we moved her from his house). I had various plans laid out much like you. All for nothing. I’m with most of the above, taking her out to lunch or ice cream seems like a good idea. If you think there might be trouble while out and you don’t want to put that on a friend maybe one sibling goes for ice cream and the other does the move. After some time out and about you might find she is tired when she gets back to her new room. This might also cut short her anger, since she will need a nap. It’s so hard to know what is best. But it is obvious how much thought and effort you have put into making this the least stressful for her and your dad. No one can be expected to do everything perfectly. Do your best.
Have you looked into meditation for your moms anger. My mom has just started medication for the anger and it is making a world of difference. I hope everything goes smoothly.
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I think your parents have some wonderful daughters and Son-in-laws and are so fortunate to have you all. You are really thinking this through which is a difficult task in itself. Just like a wedding, there will probably be some mishaps yet you all sound prepared and flexible for those possibilities. I imagine your dad may “give up the ghost” if you try to keep a fiblet running but hopefully he can flex to the plan too. This is all so very difficult! I hope your mom and dad can settle in quickly enough and dad can get the rest he needs.
Welcome to this place, sorry for the need though. Keep us updated.1 -
@SabrinaJustison said:
I appreciate your comment! My dad (a retired professor) forever wants to try to explain things and prepare her for doctor's appointments and such, and we have worked hard with him for the last 3 months to stop doing that and just speak simply. She has declined past the point that any of that is helpful. All "prep" does is cause her to start the anxiety spiral sooner, and to begin the arguing sooner.
In many respects my mom (the non-dementia parent) was more challenging of the two as she struggled to accept that he once bright partner could no longer process reality. This resulted in a number of situations in which the anxiety ramped up and he became aggressive. I got called to calm things down. It took a while to get her on the same page.
That's an interesting thought about being careful to keep this from being "her fault" in any way. Our script explains it in terms of Daddy's advanced age and heart condition, that he needs extra rest, and that the confusion she feels means he can't always find the energy to help her.
You're still making it her fault. She likely doesn't see that she is the one who is preventing him from resting. In her mind, she may be the one caring for him.
But we might want to weave staff/facility stuff in there as well…
This is one of the situations in which the dementia-informed care available in MC is more appropriate to her needs now than an AL can be. I would still pick their brains around their thoughts on this.0 -
I frankly agree with harshedbuzz. I think your first instinct about memory care for her was the correct one. I have to wonder if there is some other factor at play? Filling beds? Costs? It just doesn't make sense frankly.
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You all have been so helpful. From your thoughts here, and input from another Dementia Caregivers support group, my sister has come around to the better approach, to go ahead and complete the move while they are somewhere else, only telling our mother after her stuff is in place in her new room. We are both feeling solid with that order of events. And it will make a pleasant distraction (with a friend or one of us) much easier to set up for the time during which we are moving things.
The MC question is hard to accurately describe, but we spent an hour in MC at this community, and the folks there are mostly nonverbal or close to that point. Mother is not. She is sometimes clearer than others when trying to engage in conversation, but she loves to still make small talk and tell old stories from her childhood. To be surrounded by folks who mostly don't engage in conversation at all would be a very big change. Also, the AL services offered in this one wing of the building go all the way up through toileting/changes for incontinence.
MC would cost us more, and there are currently openings in that unit, so it appears to be a philosophy of care recommendation, not a financial one. I will be sad if we find that another move is necessary in short order, of course, but for now, we're working with the best scenarios we've discovered as we talk with staff, and their recommendation is separate quarters in this AL wing.
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@SabrinaJustison I can appreciate that it can be difficult to imagine a LO being part of a community where residents are further along in terms of progression. Alas that is the reality of a MCF that encourages residents to age-in-place. That said, the population of any MCF is going to be turning over more rapidly than you'd imagine.
You said that you hope for clarity that comes with socialization and yet you also said, "… she is very sedentary and apathetic, wanting to do nothing but sit in her recliner most of the day in spite of everyone's efforts to engage her."
The bottom line is that mom's care should be set to be appropriate for when she's struggling the most, not for those times when she's at her best. In a quality facility it does have to be either/or. She could have a room and access to the dementia informed programing and trained staff and still socialize on the AL side of things either with dad or without assuming she cares to if staff are willing to allow it. Many quality facilities can be fluid around this sort of thing. My aunt was very social and charming in her dementia, and spent most the day in AL for years doing their activities and outings while getting care from MC.
HB1 -
Food for thought: will the facility charge for extra care in the AL side of things. AL baseline may be lower, but will there be add ons for help with medications, help with toileting, help with showering etc? I remember comparing pricing for MIL years ago, and they made clear items above what comes with standard AL will be additional add ons to the bill. Has this been discussed financially?
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It has, yes, but thanks for drawing my attention to it. Her current rate includes all services she needs, even though she has been refusing to receive them. We have a clear checklist that details each cost. I appreciate your input!
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Good point, though painful to think about. Her care should be aligned with where she is on her worst symptom days, not her best.
I don't know that I'd put it together quite that way before. I think her constant resistance to care has clouded this for us. She is so mad every time someone offers help that we have only given assistance when there is no other option. And that has created a really unhealthy normal. She is mad at dementia (totally understandable), but takes it out on the person trying to help in a moment of confusion. We have been subtly shaped by that anger into a very passive role that is not best for her.
There was a brief period in January when she was allowing the aides to help with dressing, and they were so good about offering to just stand-by if she was having a good day. No one has ever forced unneeded care on her. But the assumption at each clothing change (for example) should be that she has someone at least standing by, because most days she does get confused or tangled up.
Thanks for the food for thought!
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@SabrinaJustison this is the list of all the things her DH has been scaffolding for her to look as semi-independent as she believes (anosognosia). It will likely be a real wake-up call for everyone else fairly quickly after this change.
Maybe that is partially why the staff is keeping them in closer proximity, though not in the same unit anymore? Is the thought that your dad would still provide a lot of her support but at least get some sleep? That sounds like a lot for him at his age. It might be good for you to get clarity on exactly what they will be doing, and when, to help support her ADLs and IADLs after this move.
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Very helpful! Yes, Daddy still wants to be involved, just with much better boundaries.
They will continue to eat meals together at lunch and dinner (they are not breakfast eaters, for the most part), and he will come to her room to escort her to the dining room with him for those.
Both of them are already accustomed to their facility handling food prep, housekeeping, laundry.
Mother can still use the phone to call him or one of us girls (not much beyond that — she tells Alexa to call us).
Daddy handles finances, transportation (with our presence as well, for most trips), meds, appointments, etc. He will continue with everything on that list except for meds.
She needs no help with the actual eating at this point, as long as she gets to the dining room.
She gets around okay solo with her walker.
As for ADLs -
Staff will now be administering meds, assisting with dressing and bathing, and cleaning up if there is an accident (not common).
Daddy will spend an hour or more visiting with her after lunch and again after dinner, as long as it is a day where that seems pleasant for both of them. Staff will be taking her to MC for chunks of the day several times a week (they call it daytripping) to participate in various activities there, getting her accustomed to that unit bit by bit. And for the few activities on the AL side that she enjoys (4 times a month or so, there's an activity she likes), she and Daddy will attend together.
His room will be upstairs in an area for independent and semi-independent living.
Hers will be on the wing for the highest level of assistance (before MC). Since he will live upstairs, she will never see him go into or come out of his room, so she won't be able to go and pester him when she is having a bad day and he is resting.
It IS a lot for his age, but he is tough and stubborn. My sister and I continually try to get him to find a balance point, where he is still doing all he can do in a healthy manner, but where he is letting go of responsibilities that are really too much for him. It's a never-ending dance!!
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It surely is a dance that we all are doing! They are so blessed to have you and your siblings working together so well. And this sounds like a really well thought out plan for exactly what staff will do, and when. That level of detail is a GREAT starting point, even for those days when things don't exactly go as planned.
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UPDATE: We made the move on Thursday of last week, and it was as painful as we all imagined it would be. Her room was set up when they returned from their lunch out and trip to the library. My sister and I have stayed with her most of the time in shifts since then, trying to comfort and support. 24 hours of a mix of crying and anger then morphed into unrelenting rage. For almost 4 days now, it has been a loop of the same demands for answers again and again, peppered with irrational accusations, sometimes punctuated by tears for a few minutes. Daddy comes to her door 3-4 times each day to take her to a meal or to ask her to sit with him in the lobby and visit, and sometimes she will go, oftentimes she will just let fly with the verbal barrage instead, and when he can't take any more, he sadly leaves and says he will see her a little later and hope that they can spend some time together. He is a rockstar, holding good boundaries, and he is beginning to look less gray (exhaustion makes him go from pale to gray), so we think he is getting pretty good rest at last.
Doctor added an anti-psychotic yesterday to see if we can break her free from the loop she is in, but we all know it's a crap shoot at this point. We are all facing the reality and trying to love one another well along the journey. None of us has lost our tempers with her yet in the face of the rage, as that would only ramp it up even further. The staff are just excellent, and we feel like everyone is doing their best to help her get through and adjust if there is any hope of an adjustment. Either way, it's what had to be done at this point. We are grateful that Daddy, at least, is already looking healthier. Praying that Mother will, eventually, as well. Thank you all for your support!
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Sabrina … I wonder ( and I admit, I don’t know) if it might be time for you and your sister to start backing away from her tantrum. Start giving her lots of time alone in the room. She may ( just a guess) start settling down and adjusting if you two ( and dad) aren’t there to vent her rage at. She might treat the staff with more deference than she does you. Treat this as a move to a new AL/MC that has suggested you avoid visiting for a couple weeks to give time for adjustment.
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Glad it's accomplished. I would agree it may be time for you and your sister to get out of there for a bit, you may be a trigger for your mom at this point, and you could also be providing scaffolding that will prevent them from being able to tell whether she can really function in this new situation.. Best to let the staff handle it for a week or two and see what's happening then. She may well forget about the previous living arrangement altogether if you're not there to remind her. If she can handle this arrangement, you'll find out. If she can't, that is also important information and may clarify the need for memory care level of support..
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Thanks, all. That is exactly what Allie and I decided last night…time for us to stay away for awhile unless staff call for us to come in. Daddy is backing off as well, since she seems only angry about his attempts to have meals together. So cool that this is where we landed last night, and this morning I logged in to find that line of advice from some of you! I appreciate it.
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@SabrinaJustison
I'm just checking in and wondered how you and your family are getting on.
HB0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
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AL = Assisted Living
POA = Power of Attorney
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