Sister’s Psychiatrist Encouraging her to move in with boyfriend 3 hrs away.

Marp

My sister, who has ALZ, lives with me and I am her primary caregiver.

We recently had an appointment with her psychiatrist at the VA in which the topic of my sister moving in with her boyfriend came up.

My concerns with her moving in with him include that he is 3 hours away from any of our family and he works second shift – 3-11 or 2-10, whatever it is.  This would mean that my sister would be alone in his apartment for about 8 ½-9 hours every night.

I expressed concern about this to the psych and said that I don’t leave my sister alone very much. 

The psych responded by asking if my sister can go up & down stairs by herself and if she can feed and dress herself.  My sister can do all those things.  The psychiatrist asked why she can’t be left alone then.  Apparently, the psychiatrist thinks anyone who can feed and dress themselves and can navigate stairs safely is safe on their own for 8-9 hours at a time.

I told the psych that my sister can answer the phone but she can’t make an outbound call anymore and she has trouble putting sentences together, especially when she’s upset.  I worry that, if something comes up and she needs help, she won’t be able to get help.  The psych didn’t respond to that.

I also mentioned that my sister’s boyfriend doesn’t have POA or the Health Care Designation/proxy, whatever the term is these days.  The psych asked if I have it.  I said that I did and that two of my brothers are the back ups and we live hours away; if something comes up where the people in those roles are needed in person, it would be a problem.  Again, no response from the psych.

My sister’s boyfriend also has some chronic health conditions for which he doesn’t always take his meds.  My sister needs help with her meds; how do I know he’ll help her properly if he doesn’t take his own meds correctly?  The appointment ended before I could bring this up so the psych doesn’t know this issue or some of the others that are involved.

My sister’s health care designation hasn’t been activated yet and it may be just a little too soon for any doctors would be willing to activate it (I’m sure this psych won’t).  The psych is saying that my sister can do whatever she wants unless someone has guardianship; it doesn’t seem she would honor an activated health proxy document anyway.  And I’ve tried to allow my sister to be her own person for as long as I can; I worry that activating that document would devastate her.

I don’t think my sister should go live with her boyfriend, even if it’s too soon to activate the health proxy documents.  He is a kind, caring man but there are just too many things that would make that arrangement bad for her.

And we haven’t been able to confirm if she has talked with him about moving in together.  

mommyandme (m&m)

Marp,

That sounds like the worst idea ever.  Is her boyfriend ready to miss work to help for any reason that might come up at any time?  I guess if he marries her it might be a thing. And that psychiatrist is clueless and negligent, imo, to suggest it’s a good idea, so counterintuitive. Maybe the doctor that diagnosed her would have some input to negate this choice.  If she moves, she’ll be back in a less than optimal way. 

I’m sorry, I hope this topic goes away soon for you and your siblings.  Has she talked to you about her desire to move prior to the appt? 

Marp

She has never talked to me specifically about moving in with the boyfriend.  A couple of months ago, we had a meeting with a VA social worker and my sister brought it up then.  The VA social worker said the same thing the psych did - if no one has guardianship, my sister can do whatever she wants.

My sister has never mentioned it to me, except during these two appointments.

Her psychiatrist said my sister has mentioned feeling suffocated - we don't exactly know what that means.  It could be that she wants to see her boyfriend more often than I can take her up there to see him and she's thinking she could just move in with him and that problem will go away.

My sister and I have always had different approaches to life - she has always been more impulsive - if it feels good do it- whereas I've taken a more cautious approach.  Now that she's with me and can't drive by herself, she has to wait for me to take her places; that may be difficult for her because she's not used to being so cautious.

Or it could be that she thinks I hover too much and try to help her when she doesn't think she needs it.  Not sure.

mommyandme (m&m)

I suppose if her boyfriend’s on board and she has the means to do it and the follow through then of course she can do it.  Sounds like a complicated operation.  If she has any other support there other than her boyfriend, that could help.  Maybe a conference is needed with at least you three on the reality of their future if they want to move forward. BF needs to know where you stand as her POAs. 

Maybe the impracticality of it will be in the forefront sooner than later. 

Marp

Means and follow through....

She may have means in a couple months once she begins receiving her SSDI.  I've been told on the phone she is approved but don't know how much yet.  Her boyfriend doesn't make much money & can barely support himself; I doubt his income can be stretched enough to cover her expenses.  She would definitely need to be able to bring some income to the household.

Follow through....she would have to be able to make phone calls to him to coordinate the move and she'd have to be able to figure out how she and her stuff is going to get there.  I doubt she could do that.  I worry that she couldn't even call 911 if she needed it so I'm not sure of her ability to handle all these phone calls.

Then there are transferring doctors and dealing with her bills - I don't think she could organize that.  When she gets mail, I give it to her and she rarely opens it.  She usually sets it down somewhere and forgets about it until I pick it up and remind her there is something to be dealt with. Often I end up just paying the bills.  I don't know how much he would be able to do that.  I believe he handles his own finances pretty well with what he has, but would he be able to take on hers too?

One of my coworkers suggested I talk to him to find out if he even knows she's contemplating this move and how he would feel about taking on the fulltime responsibility of caring for an Alzheimer's patient. I just don't know if that's appropriate at this point. At what point am I disrespecting her rights and her relationships?

Another consideration is his living situation - he is a renter which means he would probably have to get his landlord's approval to let her move in with him.  He also gets a rent subsidy because he doesn't make enough money afford rent; if she moves in and brings income, that may affect his eligibility for the subsidized housing.  It may even make him ineligible to live where he is and he'd have to move.   I'm sure neither of them has thought of that.

SusanB-dil

Hi Marp - This really doesn't sound like the move would be good for sis.

just a thought on something, though...  MIL has the anosognosia, so sees no need to have someone there all the time.  At times, she has even gotten a bit peeved with us and says she DOESN'T need a BABYsitter! (she can't be left alone, and we just tell her she is fall-risk and stroke-risk and person there is to make sure she doesn't get hurt)   Wonder if your sister 'feels suffocated' at times because she needs someone with her and no longer has the 'alone-time'?

Another thing is if the boyfriend knows she will be getting some compensation and hopes to use it?  Kind'a harsh, sorry, but something to think of.  His intentions could be totally toward her best interests, but from what you've mentioned, with his lack of concern for his own meds, just seems a red-flag.

Marp

I had thought of the anosognosia angle too.  When I expressed to my sister that I'm concerned her boyfriend may have difficulty getting her to doctor's appointments, my sister said, "then I can handle it."  She can't drive by herself,  has difficulty remembering when she has appointments and has difficulty following instructions and communicating in coherent sentences.  The last time I let her go into a doctor's appointment by herself, someone had to come out and ask me some questions because my sister was so nervous she couldn't think to answer them.  She goes into the examining/procedure room at her dentist on her own, but they usually come out after the appointment to go over follow up instructions with me too. So I don't think she could handle doctor's appointments on her own.

I hadn't thought of the boyfriend wanting to use her money.  It is something to think about, although I don't know if that is coming into play just yet because I don't think he knows we applied for SSDI for her.  He might know about the small Disability she gets from the VA for a service-connected condition she has.  He just doesn't seem to be the type to do things like that, but maybe I need to be careful there.  I don't really know him that well.

I've been trying not to spend so much time in the same room with her because she is okay in another part of the house.  Sometimes I deliberately go to a different part of the house to do something so she doesn't have me "in her face" all the time.  Maybe it's not enough.

Unknown By Man

I think your first step is to have an open and honest discussion with the boyfriend and see where he stands in all of this. Does he understand the complexity of the disease and how it is a progressive disease. Explain potential issues that may come up, such as many missing work, safety hazards etc . . . Then go from there.

I can say trying to get doctors on board with your concerns when they have their own take is generally senseless effort..

JJ401

The psych responded by asking if my sister can go up & down stairs by herself and if she can feed and dress herself.  My sister can do all those things.  The psychiatrist asked why she can’t be left alone then.

Dear psychiatrist: A five year old can go up and down stairs and feed and dress themselves. That does not mean that they can be left alone or should make major life decisions.

Have you talked to your brothers, who are alternates on the POAs, about this? It’s easier if you are all in agreement.

Try talking to the doctor who diagnosed the Alzheimer’s about this if you want to invoke the POAs. Does he think sister competent to make this type of decision. Talk to sister’s lawyer about the legal steps.

I am sorry you are going through this. Legal competence is a very low standard. In my state, the judge declared my aunt competent even though she denied her son was her child.

Unknown By Man

The legal standard is not low just the burden to prove is far higher for a reason. Revoking what amounts to someone's autonomy is not a choice that should be made lightly. I know from this disease POV it is easy for us to say it what it should be, but we have to look at it from other scopes. If legal compencty was based around the same metric as medical I would have had my mother appointed my guardian instead of myself at 18 due to my autism.  

I think best course before pushing legal aspect is to have an open discussion with them, being as the POA has not been invoked by her PCP or primary doctor related to her alz clearly they must feel she still has a degree of understanding. She may have this horrible disease but at the very least I personally feel you owe it to her to try and hear their side and see where they stand with the complexities of the situation. Do they have plans in place, they are adults after all. 

If discussion falls flat then pursue other options but I do feel as caregivers it is our duty to try and maintain our loved ones atomony for as long as we possibly can and keep them involved in their treatment and future for as long as it is possible.

mommyandme (m&m)

honestly, sounds like POA duties are in order. Seems like she can’t really take care of much and he wouldn’t be in any position to to do so. He probably just needs to understand (if that’s possible as many of us who’ve been in this don’t understand) the current and future difficult issues. 

Maybe BF isn’t even up for any of it and it’s just her fantasy (delusion). 

So sorry. 

Marp

My sister hasn't seen her PCP since August.  He sees her every six months for a general wellness check and then when things come up.  She saw him in August for a wellness check and hasn't had any issues requiring his attention since then. 

Her neurologist sees her once a year, unless something comes up.  She last saw that doctor in January 2021.

For both of these doctors, failure to suggest activating the Health Care Advocate isn't necessarily that they don't think it's time yet; it could be they haven't seen her in awhile and, therefore, haven't had the opportunity to notice her current condition.

She's due to see both of these doctors in the next few weeks.  We'll see if they want to invoke the health care POA. 

On one hand, I don't want it activated because I want to allow her as much autonomy as possible for as long as possible.  OTOH, dealing with this situation with the boyfriend would, in some ways, be easier if it were activated because I could just say "no", but that might come with her possibly feeling loss because she can't have a say in the decision - the loss of her autonomy.  I really dread that; I'd rather find a less dramatic way to handle this.

I don't know what you mean by this disease perception of value (POV).  What does that mean?

Marp

JJ401 wrote:

The psych responded by asking if my sister can go up & down stairs by herself and if she can feed and dress herself.  My sister can do all those things.  The psychiatrist asked why she can’t be left alone then.

Dear psychiatrist: A five year old can go up and down stairs and feed and dress themselves. That does not mean that they can be left alone or should make major life decisions.

Have you talked to your brothers, who are alternates on the POAs, about this? It’s easier if you are all in agreement.

Try talking to the doctor who diagnosed the Alzheimer’s about this if you want to invoke the POAs. Does he think sister competent to make this type of decision. Talk to sister’s lawyer about the legal steps.

I am sorry you are going through this. Legal competence is a very low standard. In my state, the judge declared my aunt competent even though she denied her son was her child.

Your comment about the five year old cracked me up.   So spot on though.

Marp

I have not yet talked to my brothers.  My first instinct after the psych appointment was to call them and babble away.  I decided not to do that  - it drives my one brother crazy when I call him and babble and it wouldn't be productive.  I figure I have to get my ducks in a row before initiating such discussions.

My brothers also don't like to talk about some of this.  They didn't when my parents were ill either - they were content to let me take the lead and step in only when there was more going on than what I could do alone.

Marp

I'm wondering the same thing about her bf - whether he is up for this and this may be just a fantasy my sister harbors to help her deal with this nasty disease and all the heartbreak that comes with it.  Neither I nor her psych has been able to get a clear answer from my sister as to whether or not they have even discussed moving in together.

I just don't know him well enough either to know how much of all this he might be able/willing to do. Taking on someone who needs, or will need, a lot of help is a tall order.

Iris L.

Why is PWD seeing a psychiatrist at all?  Psychiatry is for gaining INSIGHT.  PWD will not and will never get INSIGHT.  This is a big waste of time and money IMO.  Is this a geriatric psychiatrist for medication management of untoward behavior?

Psychiatrist has no concept of what dementia means.  Does PWD actually have a dx of a dementia?

Boyfriend three hours away?  If PWD cannot manage her own living and moving arrangements, caregiver should stay out of it and not ENABLE her.   

This is my two cents. 

Iris

ButterflyWings

 Marp, this does sound like a bad idea. And the psych is clueless. 

Please reread Iris’ point about not enabling her or problem behavior. It is tough, I know. I’d say don’t arrange or facilitate a move that seems ill advised AND don’t sit back and wait —thinking you are respecting her space. As a PWD she does need for you to be in her business, including sometimes without her knowledge of all discussions and decisions made for her safety. That is hard, but reality. I second-guessed myself a lot at the beginning and I moved too slowly on some things, regretfully. Then I realized that dementia was taking my LOs independence, not me. And that my denial (or ignorance) about that was harming us both. 

When was your sister diagnosed? And did you say how long the boyfriend has been in the picture? Maybe they want to be intimate and can’t if you are the chaperone? Or maybe he does need access to her finances to sustain (sounds like it).  You drive her 3 hours one way so she can see him? That’s not exactly autonomy.  I agree with Iris, caregiving doesn’t mean enabling things like that, which would likely dissolve if you did not sustain it for her/them. How old are they? And do you know if he is mentally sound? (You mentioned meds he is not taking right?) 

If the plan was for you to continue to be her primary caregiver, you would at some point need to be designated as her representative payee (rep payee) for Social Security since reliability with finances declines very early with AD. Please don’t sleep on this. Her autonomy and independence with money matters and business affairs is super risky. Lots of stories on these boards. 

I would secure rep payee status ASAP if I were you. The SS admin does not take POA docs. I got designated as my DH’s rep payee by contacting the nearest SSA office for an appointment and bringing a letter from his neuropsych Dr confirming his diagnosis and symptoms (that cognitive impairment compromises judgment and decision making). Plus a short 2-3 sentence letter from me requesting to be designated as his rep payee. Ask in advance and bring what they need. My DH was not present BTW.  I recall they reviewed it onsite and they made the update before the next ss check was deposited (into an account in his name, with me listed as (“my name, POA”). The bank added me to that account based on the POA docs which were effective when originally notarized). Heads up, they will mail her a letter to alert her to the change. I had to intercept that letter. At the time, DH was depleting assets and believed I was stealing all of “his” money. You may know all this!  Have you applied for rep payee status already (you said the SS ofc talked with you about her SSDI approval. Congrats on getting those resources for her by the way. She will need them. Dementia is expensive). Becoming her SS Rep payee (before BF talks her into it!) would be one way to make sure her funds aren't squandered by her, or exploited by him or anyone else. You don’t have to ask or tell her. Then if that’s not his goal, he won’t care. If it is, he may quickly find someone else to shack up with. Best to know sooner vs later. If I were you, I’d take care of that post haste. 

I also would not make or enable any more appointments with the prior therapists (?) or psychs if I were you. And your DS doesn’t have to know that either. If she relies on you to schedule, remind, and transport, you need to stop. You got great advice above, that she needs only dementia-savvy docs and caregivers now. For her safety and your sanity. Trust your instincts. They seem sound to me. She shouldn’t be alone unsupervised while he works. Even if he lived 30 minutes away vs 3 hours. Not good. Good luck!

Marp

My sister has been seeing psychiatrists off and on for 20 or more years due to longstanding issues with anxiety and depression.  Before she moved in with me, she started messing up with her meds and completely stopped her maintenance anti anxiety medication - she was only taking her as needed med and she was using that like her maintenance med - taking it a couple times a day every day.  That's not what she was supposed to be doing and she was an emotional wreck.  I worked with her doctors to get straight what medications she was to be on and how she was to be taking them.   Within a couple of months of taking her anxiety and depression meds properly her emotions stabilized.  So she does need those meds and since they're psychiatric meds, she has to see a psychiatrist to get them, at least at the VA.

My sister has a diagnosis of Alzheimer's.  It was actually this psychiatrist that noticed changes that would indicate some type of brain injury, etc, other than just the anxiety and depression.  This psychiatrist is the one that started the evaluation process with CAT scans, MRIs, blood tests, and, finally, a neuropsych evaluation.  Her own mother has dementia and she has several other patients with dementia. 

So I don't think the problem is that she doesn't understand dementia.  She did say my sister often can't communicate during their appointments and the psych is concerned the problem is her - that my sister isn't comfortable with her.  The psych said that she often doesn't understand what my sister is telling her.  The only thing she can figure out is that my sister seems sad during her appointments and the psych is worried about her well being.  But, because she can't understand what my sister is saying she can't figure out what is wrong.

I guess she's thinking a different environment would be better for my sister.  Maybe it would be, but I think we need to be smart about the change and not willy nilly take the first thing that pops into my sister's head.

Marp

Iris L. wrote:

Boyfriend three hours away?  If PWD cannot manage her own living and moving arrangements, caregiver should stay out of it and not ENABLE her.   

This is my two cents. 

Iris

I had similar thoughts - Legally, she might be able to do this if she wants to, but, legally, I don't have to help her.  Since I don't think she'd be able to pull everything together on her own, the move may never happen.

I

MN Chickadee

It's clear she can't manage her affairs. She is compromised and she named you as her POA. Theoretically she met the boyfriend when she was of sound mind and could have changed that, but she didn't she named you and now it's time for you to do the job. It is what it is. While you work on getting the POA to spring via a doctor's letter I'd do some serious therapeutic fibbing here regarding the move. Most of us get to that point with our PWD where the only thing we say is whatever brings comfort and reduces stress. The truth  becomes obsolete when their minds can't process logic and reasoning. Tell her sure, we will look into that. Sure, maybe this spring when the weather warms up or after Sally's birthday party or when I can get away from work or the moving companies don't have any openings for a few months or after boyfriend's busy season is over at work or after I'm able to get my car issue repaired or whatever.  It doesn't sound like she has the wherewithal to take the steps it would require to pull it off herself, so just stall.  Most PWD will forget what they were obsessed with and move on to something else after a while.  Keep kicking that can down the road. It won't be long before it will be completely obvious to you, your brother, and her doctors and this psych that this is an ill-fated idea and she needs you to act as her legal  POA, so just start buying yourself some time without upsetting her by saying she can't do it.

Marp

My sister was formally diagnosed about a year ago, although the evaluation process started about 18 months ago.  

I'm not exactly sure when she started dating her bf.  I think it was 4-5 years go.  She met him back in  high school and then ran into him again when she went to visit friends from high school.  He lives about 20 miles from where we went to high school.

My sister is 56 and her bf is about the same age.  I'm not sure of his exact age.  He has a seizure disorder and, if he has a seizure, he can't drive for 6 months.  He has this thing about medication and doesn't really like taking any so he sometimes will just not, although I think he may have learned his lesson on that with his seizures.  A couple of years ago, he had a seizure (I don't know if he was taking his meds properly at the time) and had to ride his bike to work for several months in the winter...in a northern state....when it was 10 degrees outside.  I think he might take his seizure medicine better now, but I'm not sure.

When I talked to the SSA about my sister's SSDI, they said they couldn't give me more details because I'm not the representative payee.  When my sister did her application, she filled out a form designating me and my brothers as something - we thought it was representative payee.  I don't know what that form does that she filled out; maybe nothing.

The SSA office in our area is not taking in person appointment for hardly anything right now, due to Covid.  The people I spoke with would not give me any information on the representative payee process; they said I must have a phone appointment with this one specific person.  No one else could tell me anything.  I have that phone appointment set up for later this month.  Because no one will tell me anything, I can't get much in order before the appointment.  Typical federal government nonsense.

Iris L.

Marp, thanks for providing more info.  Advanced depression can appear as dementia, hence the term pseudodementia.  Aggressive treatment of the depression can reverse pseudodementia.  Apparently enough diagnostic evaluation was done to come up with a diagnosis of Alzheimer's Disease.  

Many psychiatric drugs affect mood and cognition.  With a long standing history of anxiety and depression, there may be some overlap in disease pathology.  Meaning, you may not know, or never know, how much is depression and how much is dementia.  You have to observe progression because dementia is progressive.  YOU have to become a careful observer.  Especially of how your sister reacts to her various medications.  

Older people, usually over age 65 years, may exhibit a paradoxical reaction to psychiatric drugs.  For example, an anti anxiety medication may make an older adult more anxious, instead of less anxious.  This is why you have to keep a close eye on the reaction to medications.  Also why a geriatric psychiatrist is often consulted as a specialist in these meds and their effects and side effects.  I realize your sister is age 56.

Did the psychiatrist actually verbalize to you directly about going up and down stairs and getting dressed, or did your sister relay this message?  It sounds so ridiculous.   PWDs tend to confuse and jumble things.  You have to speak directly with the psychiatrist.  Also, familiarize yourself thoroughly with anosognosia.  No doubt your sister believes she is fine and can move in with her BF.  This is anosognosia.  Does the psychiatrist understand anosognosia?

Marp, you seem unsure.  But it sounds like you DO know what to do for your sister.  IMO, many professionals, like this psychiatrist, are clueless about what to advise for a PWD.  Please keep posting and seek the advice and guidance from the experienced caregivers on this board. They are knowledgeable and won't steer you wrong.

Iris

Marta

Speaking from the perspective of a dementia health care provider, the psychiatrist’s first priority is to support the patient’s wishes. Unless confronted with clear cut evidence that the patient’s wishes are not in her best interest, the psychiatrist will err on the side of the patient’s interest. 

It is likely up to you to provide this evidence, if things come to a head. Having said that, all that may be needed is for you to not support (enable) her plans. It is clear you have her best interests at heart. 

Unknown By Man

By POV I mean point of view. I do understand that for us as caregivers we have to think like a parent and the rest of the world is telling you to let loose the reigns and give your kid some slack. Though in our case giving that slack just comes with the notion giving them room to hurt themselves, and create a mess we as the caregiver have to clean up.  It most definitely is not an ideal situation cause everyone is 100% correct that this probably would result in nothing by calamity. 

I know this may not be the best take, but here it goes. Your sister is extremely young and unfortunately got a sh-- hand she has been dealt with. I do not know if you have spoken with the BF but if I you have not that is where I would start. Have a long talk, see where he stands in all of this, try to get a good as a read as possible from your encounter as per what his intentions may be. Try temporary for a little see how it works out. Given her age, I personally would be hard pressed to not even try to give it chance. She is so young, even if it only provides short term happiness in my eyes it would be worth. 

I would most definitely have a long discussion with the BF first and if he is not willing then at that you will have your answer. It does put a lot on your table cause it does sound like he is a hotmess but maybe he got his sh-- together, it is a hard sell speaking from someone that often forgets their meds but maybe he is  willing to work for this. 

 I do think at times especially at the younger onset we as caregivers should be more willing to take more calculated chances with our loved ones. Make sure mitigate as many of you possible negative outcomes as humanly possible without such heavy handed restrictions unless truly necessary. Though I am an idealist.