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I've posted a few other questions and have gotten some good info, despite me not explaining very well my situation. Rather than clarifying all the misconceptions, in this post my question is simple. My dad is on the cusp of needing memory care. (He does fine by himself dressing, showering, eating in the dining hall, etc. and his memory is fading and he gets confused, but he's also often incredibly lucid for a 94 yo with Parkinson's. )



After he moved across country this summer from his longtime home to assisted living, my 3 siblings pretty much abandoned me in terms of helping with his needs and visiting. (We all live in the same city. ) They have erected very strong boundaries around how much they're willing to do, and I get it: dad never was a likable guy. At the same time, the ALF is reevaluating whether he's going to work out there. Dad occasionally has delusions when waking up at night, and the other night he began to leave the building after hours to look up and down the sidewalk for someone who was in the delusion. Usually nobody is in the lobby after 8pm; this was about 9. But a caregiver passing by noticed that he was in his robe, heading for the door. She talked him into going back to his apartment. But now the ALF says if it happens again we must move him immediately, or hire someone at $35 a hour to sit outside his door at night. Dad was very aware he was in his robe, and says he wasn't going anywhere but didn't have time to dress before anxiously going to find this "person." He was very aware that he had messed up in their eyes.



My problem is that between the move across country, getting him settled here, fielding constant anxious phone calls from him, seeing to his practical needs, being recently sick for 2 weeks with covid, and dealing with two other family crises, I have nothing left. Each time the phone rings a big rush of acid fills my stomach and my body goes into high alert. I'm highly fearful of the next call either showing me my dad is losing more of his marbles, or from the ALF saying "2 strikes he's out ", or some crisis. My nervous system is shot. It was always oversensitive due to childhood trauma, and everything happening lately feels incredibly traumatic to me. I have PTSD from this whole thing. I'm sorry we ever moved him out here. It's been nothing but stress since late July, and I'm seriously worried about my mental and physical health. I do take meds and have a therapist but they don't solve this problem. So I'm wondering, are there people you can hire to replace me? I can't abandon the guy entirely but I can't cope anymore. The need to move him may come very soon and I am afraid it will kill me. I don't want to take anymore calls. I need a long stretch to recover from all that's happened and I am afraid there will be no option for that til he dies. (Prob within a year or so.) I turn my phone off overnight and most of the work day, but I know it's going to keep ringing and it terrifies me.

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Are you the person who actually has formal power of attorney for your father?
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This is quite a difficult situation. I'd say to go ahead and work with the ALF to get dad moved to MC ASAP. He obviously needs it. Can he afford it? If he has no money, he will need to go to a nursing home instead. Or maybe he needs a little bit of a med that will settle him down a little and keep him from wandering? I know you are so DONE with this and I don't blame you. But there are a couple of things that need to be done, as I suggested above. Get them done and then you can back off once he is in a place that is designed to take care of his needs. For the short term, you could hire an aid to make sure he doesn't wander. ALF is not meant to deal with this kind of behavior so it's the wrong fit now.

Good for you for turning off your phone overnight and other times.

Try not to be terrified. Accept that this is the current state of your dad's journey and that you can get it straightened out to some degree. The big issue is that he's progressed to where he is no longer in an appropriate setting. Accept that you will get calls and that's OK. Do your best, that's all you can do. Take lot of deep breaths and assure yourself that you CAN deal with this. Taking positive action and initiating some conversations to get this dealt with and fixed ASAP will cut way down on the time that you have to deal with this.

Best of luck!
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" I do take meds and have a therapist but they don't solve this problem."

This is good, but you are right -- they don't solve the problem.

I hope you are not considering spending YOUR money for the aide.

Was your father part of the childhood trauma? If so (and I'm wondering if this is the case for your sibs and why they refuse to do anything), then don't YOU feel badly about doing the same.

Whatever you do or don't do, please don't even consider for a minute taking your father into your home while you look for a place!
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I have heard of (but not used) the titles Geriatric Care Manager or Case Manager. I have used a Care Co-Ordinator service but found them to merely locate service providers, then email a list. Not do the actually arranging.

I think a proxy for yourself would be an actual Guardian? Unfortunately that would need legal advice & be costly... But worth checking? An emergency Guardianship must be possible.. (even if temporarily... say you moved to Hawaii, or fell ill..)

This grey area between AL & MC is a hard spot indeed.
The night worries/wandering could be a one-off? But if a few more times... If temporary issues eg UTI ruled out, then yes it does look like MC could be next.

I think I would;
1. do what I could
2. park the rest
3. get more support for myself

So, this would be things like;
- A medical checkup. Discuss issue, request medication review & UTI screen
- Build Safety. Add a location app to Dad's phone (if he carries one). Ask if ALF use bracelet alarms/trackers.
- Ensure Dad's clothing have name labels. Give local Police a current name & photo of Dad (in the awful scenario he does wander).
- Consider hiring a night sitter for say 2 weeks as an emergency until things settle (using Dad funds).
- Future Planning. Discuss Memory Care with Dad's Doctor & ask who could help you arrange this (if not right now, when needed). Maybe a Social Worker Service?

And importantly, keep up extra support for yourself. Either informal eg time with friends, or formal counselling, online/phone/in-person.

When I got to a stage my brain was racing with throughts, causing stress + preventing good sleep I did seek some councelling. While it could not solve my LO's issues (as you have found) - it did help to gain perspective, locate helpful de-stress strategies & engage me back into my life better.

Being able to turn your phone off for quality sleep IS reasonable! It is one of the reasons I knew things had gone too far when I was receiving calls at night. I still hate the sound of the phone ringing 😞
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The hard truth is that your siblings are not morally or ethically obligated to be forced to participate in another person's caregiving. Caregiving is hard. Dementia/PD is hard. And you've done yeoman's work to give him the best that you could, at a high cost to yourself.

Now it is time to accept the "least bad option" for your Dad. We don't know what his financial resources are, but if he is able to afford a hired night companion to guard his AL room, then do this. It will "only" be until he really needs to go into MC.

Hiring a Geriatric Care Manager is a good suggestion if you can find one and your Dad can afford it.

If you are just done with the management of being his PoA, and your Dad does not have the funds to pay for any other solutioins, then I would inform your sblings that you are resigning and that unless one of them steps forward you will relinquish your role to the county for them to acquire guardianship of him. I don't really know any other option to preserve yourself. You need to do self-care now. I wish you much peace in your heart!
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If Dad can afford it get him into MC. He is passed an AL. Contact his doctor and tell him Dad needs something for hallucinations.
Do not give him a phone if he is the one calling you all the time. Tell him it was lost in the move. Time for little white lies to keep your sanity. Tell the Administrator that you want no calls from the staff unless an emergency. By law, they have to call you if he falls out of bed. Falls and hits his head means an ER visit. An aide may call you to tell you he needs supplies, like Depends.

Your POA does not obligate you to visit him or to be involved in any way personally. Its a tool that gives you access to his finances. His medical, to make decisions based on what he wants.

I suggest Long Term Care if you want nothing to do with his care. All his needs will be provided. Use whatever money he has for his care and when almost gone, apply for Medicaid. In LTC everything is provided for him. His meals, his toiletries, Depends. Once on Medicaid, they will need his Social Security and any pension to offset the cost of his care. At that point, you can have the NH become payee for his SS and pension. (A small amount from his SS will be placed in a Personal Needs Acct) They contact SS and his pension plan to get this set up. Again, no phone. And you visit if and when u want. The only thing u may be responsible for is clothing. They do have where donations are made and aides will get him something from there. If once you get him settled in LTC, u still want to give up ur POA, ask that the State take over his care. Just realize that the State will take over his finances. But he will have a guardian to watch over him.

If Dad is calling you all the time and only you, "lose" the phone just make sure Staff knows you took it so they don't go looking. You do not have to answer his calls. If a cell, Block him, use DO NOT DISTURB so calls do not come thru at night. Unplug your landline. Your POA does not obligate you to be at his beck and call. Does not obligate you to visit regularly. Its just tool.
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I agree with JoAnn. Your Dad now needs memory care where there are more to care for him. You may need to consider some counseling for your own anxiety levels and I would suggest a Certified Licensed Social Worker in private practice in counseling as they are best at giving you life transitions help with modifying things, and know the drill. I sure do wish you the best.
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It is time for memory care. Until you can untangle yourself from this. Take the necessary steps to move forward. Google care advisors today. Find someone local who can meet with you . They are realtors of sort.They know what’s available, your needs, reputation, costs etc. it’s an invaluable service . They are paid by the facility. Be sure to look for a memory care who will take Medicaid…..They take this all off your hands.

call your county office of aged and disabilities. See what guidance they have for you regarding guardianship. Don’t know if they can help but it’s worth a phone call. You don’t say how financials are but if your dad needs Medicaid this is the place to start

Joann29 is spot on …
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Hire an elder care case manager to oversee daily needs, like coordinating a move to MC. You will still need to sign papers (assuming you are POA or guardian) but someone else will handle a lot of details and be the first person for facility phone calls. It can be expensive, the one I know of in rural northeast TN charges $75-100 an hour. But it worked for the elderly wife whose husband transitioned to MC. The care manager was recommended by the Area Agency on Aging.
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UPDATE: thanks all for your thoughts and advice. While I take it all in and read it again, let me clarify a few things:
- I am not his POA, but am his health proxy.
- He does have enough money.
- Is there a step between ALF and memory care? It seems like tht's where he belongs because as Beatty mentioned above, it could have been a one-off... Are there memory cares with something other than a little studio? They seem like prison cells. He will hate the tiny space and that he has no privacy. He will hate that he can't have all his furniture and sheet music and paintings around him. He asked me recently if I would ever "lock him up."
- He has had plenty of medical checkups and is ok. The neurologist just decided at my request to start him on 10mg of citalopram, which has been shown to help reduce delusions and obsessions in dementia patients. Maybe that will buy us a little time, but hard to say.
- I am highly empathic and sensitive, thus the high alert nervous system. It's how I got wired and is impossible to change. I know people who think I should just "turn it off" and if you're an empath you know this is like saying to a zebra "don't have stripes!"
- His phone is a landline. He also has a cell. It would be hard to "lose" both....he's not so far gone that he can't see through this kind of thing.
- He and I actually have a decent relationship, which is how I ended up doing all this stuff. Childhood trauma was due to him, sure (narcissist and rager). I never wanted to visit him twice a week or be his main phone call daily. I expected him to make some buddies there but it's only been 3 months and is taking a while.
- I do see a social worker as my therapist.
- In a big city like Seattle, it oddly has seemed diffciult to find a care advisor. The couple I did see online were lawyers. That sounds odd to me.
- My husband is calling around to memory care/continuum of care places today that are well rated, to get availability, costs etc.
- I did plant the idea of moving in his brain last week by saying "Dad, do you think this is a good fit for you? I'm not so sure. I think maybe this place has too many rules." This was my way of telling him there might be change afoot. I also took great care doing it, but told him that if he broke this "rule" again we'd have to find him a new spot. He understood and seemed accepting of it (at the time). Since I'm his "favorite kid" if I told him all this was killing me and moving him is the only solution, he'd be sympathetic for sure. He'd still be stressed out again though, just like the rest of us will be when the time comes to move him.
- He also was in the hospital recently for COVID, for a week, not that he got severely sick, just moderately. But the COVID brain made him more delusional and he didn't understand that he needed to quarantine. Doc thought hospital was best place. Since he recovered that delusional mindset has faded but it was hard. Nobody could visit him in the hospital and the isolation there and then in his apartment for 3 more days did a number on his mind, as it does for everyone who must quarantine for 10 days.
- On top of all this, my husband fractured five ribs a few weeks ago, and my brother had emergency brain anuerism surgery. So it's been an incredible challenge lately, Plus a full time job. I took a week off for my own covid recently though. :-) Yikes!
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babsjvd Oct 2022
I googled the franchise I used to place 3 times with by me..

care patrol ….they have a number of advisors in the area of Seattle.

this would save so much time and energy for you and your husband
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Kablooie--

I feel like we could be twins in the 'overly empathetic' and PTSD issues. I also am always on high alert--all the time. Being both of the above makes us ultra-sensitive to a lot of things. I don't like small spaces and large crowds. If I am anxious about something, I don't always handle it well and I try so hard to 'not feel that way'--it's exhausting, isn't it???

My mom passed several weeks ago. I'm still jumpy and emotional, although around my Dh (who is my exact opposite!) I act calm and collected. That also is exhausting! I did a fair amount of CG for mom, and tried to 'help' but was often shot down by either her or YB with whom she lived. Then I'd feel like crap because I was trying to be helpful and it never seemed like I was helping!

Your above statements that 'there is enough money' makes everything possible. You don't have to worry about nickel and diming everything.

I think JoAnn hit the nail. Time for dad to move to a higher level of care. We often don't see the solutions until someone points them out to us.

Yes, your dad has been through a lot of changes, but that's something he has to deal with. Moving him to a higher level of care should exacerbate the worst of the problems, if the constant phone calling, wandering and being a pain (whether he's meaning to be or not) can be dealt with.

Money can smooth over so many of life's indignities--let dad pay for all the 'better care' he needs. IDK what kind of facilities you have for MC-- they are usually smaller rooms, but they can be made homey, as his current place sounds like it is. Perhaps he can simply move 'up' in the current facility, making it much easier to transition.

I'm glad your DH is helping you. Let him! And take a note from your sibs. They 'checked out' b/c of the way your dad IS---you were the last soldier standing.

-Get dad moved
-Block his incessant calls
-Take some kind of break, if you possibly can

Then be sure you care for YOU. I have had a rough couple of years and I have found that a daily nap (or even just lying down with a book) for a couple of hours can recharge me.

It is VERY hard to care for the person who caused your emotional issues in the first place. We're not alone in that.

((Hugs))
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Kablooie Oct 2022
Thanks much MidKid. Appreciate the support. Just wanted to add to my long update one thing, since I can't edit my update anymore:
Dad is not incompetent, has plenty of agency and thinking skills left. His docs just say it's MCI. My friend's mother was in memory care and I visited and it was like a floor full of zombies. It is hard for me to picture putting my dad in a place like that. Are they all like that? If so I see him getting depressed and giving up. Also, he dislikes not having enough young people around now as it is. He doesn't like being among the old.

(Oh, and a sibling is POA.)
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MCs are very different. Some seem to only have a lot of people at the end of an ALZ journey. Some have a lot of people with many skills still in place but needing external "scheduling" of stuff like meals and baths and some dressing assistance. One facility here has an MC "light" wing for people who are still highly functioning but need a locked facility to keep them from wondering. I was able to find one with a larger "apartment" (enough for bedroom and small living room suites), an outdoor porch and garden walk, and allowed me to cover the walls with photos of Dad's collections. Privacy is a two way sword for older folks; you want to be left alone until you experience a fall (or other issue) and want some help. The newer facilities are usually larger; stay away from converted hospitals if possible; they were not built for someone to "live" in and seldom provide a good long term situation unless you really need nursing services.
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I googled care advisors Seattle WA and found the franchise that I used has agents on the Seattle area.

Care Patrol … an invaluable service , will streamline the process for you and your husband…
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Find him memory care That seems like the solution .
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Is Dad on any sleeping medications that may cause sleep walking?

Maybe get his meds checked?
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Kablooie Oct 2022
No but good thought otherwise...
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In addition to medication, here are some causes of sleepwalking:

Genetics and family history: Studies shows a clear pattern in which certain people are genetically predisposed to sleepwalking and other NREM parasomnias. About 22% of children whose parents have no history of sleepwalking will experience this condition. In contrast, 47% of children sleepwalk if one parent has a history of it, and 61% of children sleepwalk if both parents do.

Sleep deprivation: A lack of sleep has been correlated with an elevated risk of sleepwalking, which may be due to more time spent in deep sleep after a period of sleep deprivation.

Some medications: Medications with a sedative effect may push people into a type of sleep that increases their chances of having a sleepwalking episode.

Alcohol: Drinking alcohol in the evening can create instability in a person’s sleep stages and may heighten the risk of sleepwalking.

Brain injury: Conditions that affect the brain, including swelling of the brain (encephalitis6), may be a trigger for sleepwalking.

Fever: In children, fever has been found to make sleepwalking more likely, and it may be related to an increased number of illness-driven arousals during the night.

Obstructive sleep apnea (OSA): OSA is a sleep disorder in which the airway gets blocked, causing short lapses in breath during sleep. These pauses, which can occur dozens of times per night, create sleep interruptions that may give rise to sleepwalking.

Restless Leg Syndrome (RLS): RLS is a type of sleep disorder that causes a powerful urge to move the limbs, especially the legs, when lying down. It causes nighttime arousals from which a person may enter into a sleepwalking episode.

Stress: Various types of stress can affect sleep, including causing more fragmented or disrupted sleep that can increase the propensity for sleepwalking7. Stress can be physical, such as from pain, or emotional. Some types of stress may be related to discomfort or change such as when traveling and sleeping in an unfamiliar place.
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Imagine putting a four-year-old in high school and expecting things to go well. That's where your dad is now. You're putting out fires that can't be handled by a place not designed to deal with someone like him.

Get him into memory care. Take away his phone or let his calls go to voice mail and you call him instead. The staff at memory care are trained to deal with your dad's issues, and they'll do the heavy lifting.
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There are maybe levels of memory care. High functioning versus low functioning. My dad would be in the high functioning even though he's physically frail and has some dementia. So someone above mentioned memory care "light" and that sounded just right for where he's at now. But it also sounds like very few places offer it. I connected with a local care advisor so thank you for that recommendation as well as some of the others.
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againx100 Oct 2022
I also wish there was something between assisted living and memory care. My mom is living with me still because she's in that whole where I don't see either as a good fit for her cognitive abilities. Too bad for AL, too good for MC. She would be a fish out of water in either situation. So I am waiting for a decline or an improvement (not really).
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If your sibling has formal power of attorney for your father, you should decline any phone calls from the facility related to his continuing to live there. Not your decision, not your responsibility, not your problem. It is for the POA to support your father's decisions and reach agreement with the facility.

Refuse the call and redirect the caller to the POA.
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Sendhelp Oct 2022
The OP says:
"I am not his POA, but am his health proxy.''
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To answer the question you asked – whether you can ‘hire someone to be your proxy' - it depends on what you mean by proxy. Yes, you can hire someone to do the jobs you usually do. For that to work for your situation (eg to take phone calls) you would probably need to make them ‘a friend’ so that your father would accept talking to them instead of you. No, you can’t hire someone for the legal powers and responsibilities of being a POA – but then you say that another family member is the POA. Perhaps clarify what you meant by ‘hiring a proxy’.

Regarding the ‘prison cell’ MC units, in my limited experience they are usually singles, and yes they are small. You would need to work out carefully how to fit in furniture to make it acceptable. Paintings are probably easier on the wall, and sheet music usually stacks in a small space – look for a good filing system for accessibility. If you go down that path, encourage Dad to use the common areas, and perhaps see if you can decorate them with some of his paintings so that ‘his visual area’ covers more space. If he plays keyboard music, perhaps he could do that in a common area too.

You and Dad are at the ‘least worst’ stage for options. It will be a bonus for both of you if you can both understand that. Yours, Margaret
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I re-read as I felt I missed the issue. It seems the current & future phone calls from the ALF are the biggest problem? Causing awful stress.

Dread. Like a heavy black fog. Ready to smother.

I think it may help to examine this fog. What's it made of?

Fear of the unknown? Of the future stress? Obligated to help? Guilt if you don't?

As others have now pointed out, the decisions for where Dad lives fall to 1. Dad (if he has capacity) or 2. POA (if not).

I'm wondering if shining a light on where responsibility actually lies could help remove this fog?

Keep it simple. Explain to both ALF & POA sibling you have concerns re Dad's recent nighttime incident. Point out the ALF & POA will need to work together. Have this chat to both parties, or even all together if possible.

It seems you were caught in a triangle, when really the other two sides need to communicate.

Hopefully once you are free of that fog, you may return to being a visitor for Dad, whereever he lives, at the frequency that feels right.
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Read your letter and while I can empathize, it's hard to offer sympathy (yes, I know it's selfish of me). Yes, it's difficult and traumatizing, etc., etc. but really it's not that bad. You're not taking care of him 24/7, you haven't done this for two persons at once, and you have the freedom to "turn off your phone at night and ...the work day" to avoid the issue. Consider yourself fortunate. Does he have the $ to have a night time sitter? If not, would your siblings be willing to chip in some $ to hire one? If not, can you arrange an appointment with his doctor and see about transfer to a higher level of care? Yes, I realize you don't WANT to do, but you may HAVE to do it. We all want out but seldom can achieve that unless you walk away entirely and have him remanded to state care.
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Slartibartfast Oct 2022
I'm fascinated that you felt strongly enough to type out and post this "advice". It sounds like if someone isn't experiencing what YOU experience their situation isn't worthy of your sympathy. What a limited way to view the struggles of others.
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You have Medical Proxy, but appear headed for burnout.
Yes, hire someone.
What you may need is called a respite.
The patient is cared for while you take time off, or go on vacation.

Start there.
You might not need for Dad to appoint a new Health Care Proxy.
Using his funds, do hire a Geriatric Care Manager, requiring that person to field the phone calls and negotiate with the ALF.

It could be as simple (for you to take a break, then re-assess) as hiring a 24 hr. attendant/caregiver.

Otherwise, ask for Dad to have an evaluation at an in-patient Geriatric Behavioral Unit by a neuro-psychiatrist. It could take a few weeks to find the right medication. Call his PCP, saying because of behaviors, Dad could lose his housing.
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I am confused. Sibling has POA? Is this for financial?

But Kablooie, you are Medical POA? Is that right?
(Medical proxy or whatever legal term - you are authorised to make medical decisions for Dad?)

*Living arrangements* are *lifestyle* decisions. (Obviously financial & medical are both big factors).

Trying to work out WHO has the legal reaponsibility for *lifestyle* decisions here.
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