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We have been trying to get medication to reduce his anxiety but doctor reluctant to increase dosage. He is 88 with many health issues. From the minute he wakes up he starts phone calls demanding to go home. He makes nasty threats. He phoned police yesterday demanding they take him home. We get over 20 calls a day. Talking on phone or through window is not working. We can’t figure out if it is his hearing aid (batteries have been replace often) or he doesn’t understand. Or doesn’t want to understand. We have sent him letters and emails.
We have been trying to figure out how to safely look after him if he returns to his house. The stress is over the top for everyone. Any thoughts........?

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Is there a resolution for the possible UTI?
Can we have an update please?
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That sounds a lot like Alzheimer’s.
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My thoughts for this is that with my mother in law, I treated her like a second mother,she also said that she wanted to live her last days in her house. Perhaps he wants to do the same. There must be something you can do for him, maybe hire a nephew, niece, granddaughter,a social worker or someone you can trust. You all will be in our prayers that you get a solution for your dad quickly.
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Hello, Wild31 : ) Bless you and your family for all you're doing. I wish you strength during this time. I'm glad you're here for me and for sharing yourself and your struggles with us. May you know peace.
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Wild31 May 2020
Thank you
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THAT is what their JOB is...Too bad. THAT is what. DAD is paying for. He is safer there unless you Find a Caregiver a thome, He cannot be left Alone.
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IsntEasy May 2020
If they can't properly take care of him, they are doing the responsible thing by asking the family to find a new place for him. If he's in an AL, it sounds like he needs a SNF or Memory Care.

I'd pressure that doc. Your dad is 88 with many health issues and it sounds like his anxiety is through the roof - 20 calls?! What is the doctor trying to accomplish by denying him the meds that may help him? If there won't be any side effects that affect quality of life, I'd push. Or, have the community's doc take him on as a patient.

I'd say ask the community if you can gown and mask up to go in an try to calm him, but even if you were successful, it wouldn't do any good longterm.
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I too had the same problem with my Mother. What I did was to go and participate in activities she might like with her in the retirement home. Eat dinner with her. This way you can help engage them in meeting new friends who also live there. Make sure to also spend time with them as often as you can while they are in there. I hope this helps.
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Wild31 May 2020
Do to Covid they are in lockdown. It makes things very difficult.
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Imho, he may require a higher level of care.
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Have a somewhat similar problem with my brother in California. He went into a rehab facility initially (which is also a skilled nursing facility). After finishing his rehab, there was no place for him to go that he could afford. Since he's on Medicaid, we applied for a state assisted living waiver; still waiting for approval. This would allow him to receive an extra allowance from the state but there are very few places to choose from.

He's been diagnosed with bipolar disorder but refuses to take the appropriate medication. And without a comprehensive court order, he can't be forced to take the meds. He hates it there and complains all the time. He gives the staff a hard time so they don't want him there either. But state law doesn't allow the SNF to discharge him unless there's a safe place for him to go. 

My concerns are: 1) Assisted Living Facilities are barely regulated at all and certainly not like SNFs. They don't have to wait until another facility accepts him; 2) With his bi-polar disorder it makes him very difficult to get along with. I am told by the local ombudsman this is becoming a common problem with difficult seniors with mental health or personality issues.

I am extremely reluctant to agree to him going to an assisted living facility because of the lack of restrictions on them and none of these facilities (SNFs or ALFs) are prepared to really take care of someone with mental health issues and they won't approve him for a facility that takes dementia patients because he hasn't been diagnosed with that.

I don't really have an answer but my only advice is don't allow him to be moved until you have a good, safe place for him to go. Like my brother, it sounds like he wouldn't be happy anywhere. I totally understand your frustration. My prayers are with you.
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Wild31 May 2020
I am very sorry for your struggles with your brother. I hope a good placement works out.
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Take some time out from the non stop phone calls-do some online checking of other possible places now before they might say he has to go. It is hard enough to find a good solution when you are under a demand to exit in 2 weeks etc. My sister became combative when she was frustrated with her community-too hands off and she needed more and more help. Some places refuse to take combative people at all. Sis was in an area with combative folks-who sometimes took up arguing with me when I would visit sis-staff were hanging out in the nursing office -no call lights etc. and took a while for someone to hear me calling for assistance with the guy. In between her old place and acceptance at the next place she was hospitalized for 3 weeks to get her meds under control-it was tough very tough sis was in restraints most of the time as she wanted to leave and did not like the people caring for her and why she could not get out of bed. I did not bring my sister here I was afraid she would lash out at me, try to leave-in the middle of the night, fall down the steps or a million other things. She did not know my family any more so she would have probably freaked out at some point. Repeat do you own homework first-if he does end up going to the hospital for assessment do not accept the first placement unless it is one you are comfortable with too. Mind you I was not in favor of the idea of hospital assessment but felt some med adjustment could be resolved/improved.. With corona and facilities pretty much in lockdown still your dad would maybe have a better chance getting placement from hospital discharge vs. coming to your house directly-i don't know what the procedure would be of acceptance once a person has been out in the world at your house-possible exposure etc. to make sure dad is not a carrier.....In general Around here facilities with a bad rep have had the most corona cases-beware.
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Wild31 May 2020
Thank you for taking the time. You have made some good points.
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His needs have increased & being in a retirement home, you have to be somewhat independent & not have dementia or Alzheimer’s. This is what’s happening. Take him to neurologist & make sure he gets brain MRI . Probably mini stroke(s) which cause dementia. He needs to be on medication for agitation caused by dementia. Neurologist prescribe these meds all the time & they are familiar with the all these similar behaviors. He can either be managed at home if he gets 24/7 Homecare, or try a memory care facility. Probably best is nursing home since they are most equipped to handle his behavior. Sometimes, when residents act up in SNF, they have to go to psych hospital for medication adjustment. But if you get him under care of neurologist, this can most likely be avoided. Hugs 🤗
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Wild31 May 2020
Thanks for your input. It has been helpful.
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Hello. Glad you have so many thoughtful responses to consider. I may not add much to your considerations although these are my thoughts:
1. Sounds like you need to consider your options, both moving him back home or making alternative arrangements. It is a financial and emotional/psychological consideration for you.
2. He is confused and frightened. Will he be / feel / be aware of being 'home' or elsewhere to feel less anxiety and fear?
3. In the interim, can he get more meds to deal with the anxiety?
4. Be careful - be aware of managing your own anxiety and emotional, physical, and psychological needs. Wearing yourself out will not help him.

My friend just last week lasted 2-3 nights in Skilled Nursing Rehab. He called me after there an hour BEGGING me to pick him up; after two days, he was ready to run out the door. The screaming throughout the night [of others], the 'bad' food, the lumpy bed, the nothing to do for 10 hours after 30 minutes of PT. He couldn't handle it. And, this was just a few days.

Your heart will tell you what you need to do. Gena.
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Wild31 May 2020
Thank you for your thoughts. It has been hard managing anxiety. We were able to have his meds increased starting soon. Hopefully this will help him. Thanks.
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Get him out of there...FAST!

At least the staff is up front with you.

I had a loved one who was in a skilled nursing facility, and developed a stage 4 bedsore. The staff told me NOTHING until one night I, walked into her room, while she was being prepped for bed and saw the ulcer. I took her to the nearest hospital. The ulcer could not heal, and she passed away a few months later.

Be thankful that the staff is communicating. Also, in this age of COVID19, there are reports of SNF's not even telling relatives that their fathers/mothers, etc. have contracted COVID19.!!!
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Katie22 May 2020
tom418, I had a similar experience when my mom was in a NH which was a 5 star Medicare rated facility. She went delirious from a UTI and was rushed to the hospital, where the intake nurse asked me about the stage 4 wound...I was stunned as no one told me about a wound in the NH. I had also repeatedly asked them to test for UTI as she was not herself and was blown off, they kept telling me she had sundowners. Not so. I took my mom home and she went on hospice. Have anger issues to this day about that NH.

UTI's in the elderly don't show the same symptoms as young people get. Frequently UTIs show as behavioral symptoms, even leading to delirium in the elderly. I always recommend a test to rule out other things, and an antibiotic can be given for the UTI.
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After reading all the comments and your profile, there are many suggestions here that might help.

1) testing for UTI
2) assessing current medications
3) remove or disconnect phone
4) consider MC

1) As many noted, UTIs in elderly, esp those with dementia, can present in odd ways. Generally if a behavior is a sudden onset, test for it. The test isn't hard, expensive or invasive, but it can rule out the UTI (get a full urine test, not just the dip stick.) I was a skeptic until it happened to my mother. First one resulted in severe afternoon/early evening sun-downing. The last 3 have presented as night time bed-wetting - soaking everything! Once treated, both issues resolved.

2) Elder's needs for medication can change over time. Not long ago the doc removed one of mom's BP meds, something she's been taking for a really long time! Have all his meds reviewed and have him reassessed. Some may be causing some of his issues.

3) Removing the phone might contribute to more anxiety, so perhaps just disable the service, at least until the underlying issue is resolved? I don't believe there is any way to eliminate the ability to dial 911 - even a cell phone with no plan can make this call. I purposely didn't give my mother a phone - even if she could make the calls, they wouldn't be to chit chat, they would just be nuisance calls and with her hearing she wouldn't understand anything!

4) Do consider MC. Your profile says AL, and if it is strictly AL, they are NOT equipped to deal with cognitive issues. Early stages might be okay, but as it progresses, they are not set up to manage dementia. AL is mainly for people who need physical assistance, although they can start there if in the very early stages.

Your reply indicates he's only been there 3 months, and initially seemed to be fine, engaging in social activity, making friends, etc. If everything medical is ruled out, it could just be the restrictions in place. It's enough to make "normal" people loony (or worse!), and in his case he probably doesn't understand why he is locked down.

Mom's facility is IL/AL/MC. The IL and AL have pretty much been restricted to stay in (they can sit/walk just outside, but no off-campus activities other than necessary medical treatment is allowed) and that includes staying in their own rooms. For the MC unit, it really isn't possible to keep the residents in their room, so they are allowed freedom of movement within the unit or into the enclosed garden area, weather permitting. All outside activity brought in previously has stopped, and mealtimes are staggered to allow more space between residents, but otherwise they are free to move about.

Given that he was adjusting and is now probably restricted to his room, this could be contributing to his anxiety and need to get out. So, again, rule out anything medical. If it is just the restrictions, given all his other issues I would consider finding a MC place for him. He already has dementia and it will progress, so now may be the best time to move him. If his current facility doesn't have that option, start searching for one that has openings and that can take in a new resident. In the meanwhile, after medical issues ruled out, notify the facility that you are seeking another location (not home!!!) and request they give you time to find a place. Obviously they are aware of what's going on outside the facility and know this will be a challenge, they should be willing to cut some slack.

If not, ombudsman? EC atty? Get someone on your side to help protect your dad!
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Wild31 May 2020
Thank you for your detailed well thought out reply. I will keep referring to it as time goes on. Stay safe.
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Your statement 'we've been trying to figure out how to safely look after him if he returns home' speaks volumes. It really means, to me, that no safety net comes quickly to mind and more than likely it is because you don't have family/friend volunteers to make it possible. Don't even consider it if there is only 1 or 2 who step up to the plate.

Home would be GREAT if that's where he wants to be IF IF IF you have all of the bases covered before arriving at that decision. How is 24 hour care going to be handled. Do NOT bring him home with a few family members saying they will work out a rotating plan to sit with him because it will (1) never happen or (2) excuses will start rolling in about the assigned days. When some figure out they can't do the personal jobs that have to be done - you'll be left with the one person who does it out of love, guilt, whatever reason it is. Then you'll be right back to where you are now and fighting to move him BACK into some kind of facility. And, most important, you will be killing that one person who won't say no.
If he has $$ to pay for 24 hour care, then by all means use it until it runs out. Get your best person in the family to interview and choose the hired help because you are going to be searching for some thick skinned people with experience in dealing with bad attitudes. Not all so-called hired caregivers are willing to take verbal abuse even though they know it's not always a clear head dishing it out. You also have to be prepared to do last minute coverage because paid employees do call in sick, do have personal emergencies, and do quit without notice. Once again, no family volunteers, you have no plan.

If 24 hr care is not possible - find a geriatric doctor who better understands elderly and their issues and get advice on proper facility placement. ALWAYS ask for urine test when personality changes - meaner, sees things or talks about things that didn't happen, etc. UTI can change a person overnight and can be treated. If there was recent medicine change along w/personality change - ask the pharmacist or look up the drug for side effects.
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Wild31 May 2020
You have given me so much to think about and given me more direction to focus on. We have been put on a list for a generic consultation but were told we may have to wait a year!! I don’t know how much is actually dementia or his very strong personality. This makes harder to decide where to place him.
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If he doesn't have a UTI, he may think that if he keeps railing at everybody that he wants to go home and if he misbehaves enough, he will get to go home. He's halfway there it sounds like to me. The facility wants him out of there so he is succeeding. This is very hard I know but the reality is the facility CAN boot people out. It was in the paperwork when I admitted my Mom, who had multiple health issues plus dementia, into a facility. She had a roommate who screamed & railed at every CNA or nurse that walked into the room and they switched her to other rooms and everything because she was a screamer and the other patients and their families complained so much that they had to remove her from the facility. I was all for her removal too since when she was in the room with my mother who could not see anymore, my Mom kept saying who is that and was all upset. It was awful. Good luck to you. It is very hard on the patient too because they really do want to go home and even with dementia, they are in and out of it bouncing rational and then irrational thoughts around. So sad. I hope you can find a good facility for him.
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Wild31 May 2020
I think you are right about misbehaving to get out. He told me once that he will do anything to get his way. Thanks for your time.
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I think you know in your heart of hearts that returning home would not be in his best interest due to his anxiety and safety concerns. What type of community is this? Is it assisted living or memory care? Memory care may be a consideration. Since his physician is reluctant to adjust his medica tion, have you considered an evaluation by a geriatric psychiatrist? They are specialized in treating mental health issues in older adults including managing dementia. If you would take him home, I'm thinking a live in caregiver would be needed. Bear in mind that option has issues too. I think safety needs to be paramount.
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Wild31 May 2020
Yes, safety first. I have thought of a live in care giver. Finding one might be difficult. We are now on a list for a geriatric consultant but we’re told we might have to wait a year. So hard to know ...thanks for your input.
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As others have said check for a UTI. I was told that one of the first indicators of UTI is anger. So we test mom whenever her mood changes and gets worse day by day. We also got the help of a geriatric psychiatrist. A wonderful help with offering help to mom and to us. Also to consider meds if needed. If you get a consult send the doc an email with your concerns and list of meds before she/he visits Hope this helps. Take care. This is a rough time for sure.
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Wild31 May 2020
Thanks, as of today we are working on all that. I can’t believe we were only able to get a ten minute phone call from his doctor on a Sunday.
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Why does he have a phone? My mother-in-law lived in an independent apartment or retirement home and would make those phone calls until she was diagnosed with Alzheimer’s and was moved into a memory care community, no telephone. I agree with gladimhere, smaller memory care communities are better; my wife is in one with twenty residents, with three to four caregivers. Communication is key, the executive director or assisted living director can put in the orders for UTI test, geriatric psychiatrist, and/or change in medication. I did not have a “care team”, (doctor, nurse practitioner, physical therapist, etc.,) so relied on the memory care with their contacts. When my wife fell the memory care director knew who to call when I requested x-rays of her knees, a mobile unit came, did the x-rays, I did not even have to be there. LeChelwelborn65 says what if he has an emergency? if he is in a memory care community or skilled nursing, he is being watched 24/7 if there is an emergency. I am still new to this Caregiver Forum but after reading so many of your concerns see that many have waited too long to seek help. When my wife started down this road, I took her to adult day care at a memory care community for the activities and socialization I was not able to provide at home. Keeping someone at home with this disease is not to your advantage or the one with the disease. Even the caregivers in the memory care communities have problems caring for the residents and they have years of training, how can we possibly do better with no training. For the ones that 24/7 care is too expensive, I understand, but for ones that are still young start being prepared, the cost of long term care is only going to be more expensive. Wild31, wishing you the best, learn your lessons from this experience, and be prepared when you reach your father’s age.
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Wild31 May 2020
Thank you for taking the time to reply. You made some good points.
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This happened to my father after he entered rehab at a long term care facility. He had developed a UTI at home which led to sepsis and was admitted to the hospital where he spent a week there prior to his admission to the LTC facility rehab. Dad had been getting into trouble at home, accidentally hurting himself three seperate times plus he was financially in trouble but didn't realize it, as did no one else. Our family met with our parent's elder care attorney who helped us transition dad from rehab to his being a full-time resident at the facility. Dad was already in full dementia but was never medically diagnosed from an evaluation. He made it his mission to get out of the facility until finally the phone call came, they were discharging him. I personally called the elder law attorney to explain, she called the facility to let them know they could not release my dad until a competency evaluation was done and a court hearing was held to deem my dad not capable of making his own medical decisions. After 9 months from start to finish and a neuropsychologist's psych evaluation, my dad was ordered to stay in the facility. His POA was then in effect with both his primary care physician and neuropchycologist signing legal papers stating my dad was not medically capable of caring for himself. He never understood it but our family were all on the same page, dad was no longer the same because of the dementia and this was the best place for him to get 24/7 care that my mother, brother and myself could not give him. Dad was in the facility for 4 and a half years until his death September 2019. Believe me, it was never easy. Best thing we did once he was there, no phone. He never really liked it at the facility but he knew they took good care of him and we knew that, too. My mother is currently in the same facility and has been for over 2 years. She knows she can no longer stay at home but does not have dementia. It has been hard being in quarantine for her and for our family but we do speak with her on the phone daily and drop off current pictures, reading material and toiletries weekly. This pandemic is causing more stress on the elderly and their families than normal, that's for sure. My advice to you is to seek advice from a competent elder law attorney in your area. Yes, it costs money for an attorney but, believe me, in the end, it's worth it. They have answers to questions we don't even know to ask. I'm afraid there are no easy answers but, in our situation, prayer was a huge help as well. I sure hope and pray things work out for the best in your situation.
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Wild31 May 2020
It is mind blowing what people have and are going through. I really hope it doesn’t come to getting a lawyer. Thanks for your time and help.
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Be realistic about whether you can care for him at home. Remember that at his age his health is likely to get worse. Do you think his state of mind will be better when you can visit him again? If so, maybe you can talk to his doctor and ask if increased or changed medications can be a temporary solution during the coronavirus lockdown.
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Wild31 May 2020
Just got an increase in meds ordered. We sat outside but dealing with hearing issues now,
lit never stops.
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COVID-19 restrictions are driving older people crazy. They have nothing to do, and no interaction with anyone. It is infinitely harder for them than the rest of us. Find out what they can do for Dad now. It might not be possible to move him, and it may be that he is one of many residents that is overwhelmed by the isolation. That means that the facility needs to make changes to keep people healthier and more active.
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cak2135 May 2020
Whose bright idea was it to have illness, anyway?
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It kills me that Homes do this. I guess sometimes they forget they are trained professionals to professionally deal with Alz/Dementia patients. Your father, at 88 years old should NOT be denied medication that will help him. There should be no concern whatsoever. Changing his behaviors aka reducing his anxiety is exactly what he needs. If they are concerned about 'falls' or whatever bullcrap answer they give you...keep in mind that falls will happen anywhere, anytime. He's 88 and should never be denied anything. I'm assuming your dad is a Veteran. So the doctor needs to remember that it's because of Veterans that he's even allowed to Practice medicine. Check your 'patient rights' (not enough characters left to type it here but it's important).... I had this pulled on me with both my parents. Very upsetting. Best of luck.
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sister46 May 2020
You're right on. Am dealing with this exact situation right now on behalf of my husband. If these "trained" (and I've started using that term loosely--I'm not sure any of them are trained) people can't handle a dementia patient, how do they think the family can? If a patient is "dangerous" to them, what do they think the patient is to us? It's the reason we had to put them there. Nothing upsets a patient more than to be transferred to another facility. And they should NEVER be sent back home. As much as I love my husband and would like him here and would love for our lives to be the same as they were for 52 years, I know that bringing him home would be the worst thing for him and me. It would be a volcano waiting to erupt.
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Responding only to the phone calls..... my mom did this, then she moved on to 911, while in a facility. When the policeman came, she would deny and berate him. Possible phone solutions:
1. Get him the phone with video and text. We did, but it did not help as mom refused to look at the screen or read the words. Still, it might help dad.
2. Buy a cell and program it with only your # and all other relevant relatives. That way, no 911 calls.
3. Give him a dead table top phone. We did and mom had imaginary conversations all she wanted.
4. Remove phone and any phone privileges. The facility can call you if an emergency.

Don’t bring him home.
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Wild31 May 2020
I will be looking into the phone with video and text . Thanks
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What about hiring a virtual ombudsman to help your father cope? I went through similar behavior problems back in pre-Covid times with my mother's mental problems, and my sibling and Ieven had to get the police one day when she refused to go back inside her nursing home after an outing. Behavior problems may happen, COVID-19 or not!!
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Wild31 May 2020
I will look into this virtual ombudsman for help. Thanks
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Not sure what type of services are provided by retirement home. If they have a facility doctor, they may be more willing to medicate but since he did settle at first, I would confirm there is no UTI. They may also have a psychiatrist on staff who can evaluate him. He really may not be a good fit if this new behavior does not improve. If he has a room phone, that can be turned off but it will make him more angry.
when my mother first went to facility, she wanted to be there for first 2 hours. Then she did not get her way and started calling us non stop. And texting too. “Get me out, get me out, get me out”. We did not go see her at facility recommendation. She did this for two weeks. She started one morning calling my sister at work literally every 5 minutes. My sister is the nice one. She did finally stop but it was awful while it was happening.

He needs medication to calm him down. And you probably need to find a memory care facility who can deal with his behavior. 24 hour care at home is extremely expensive. It can be hard to find consistent staff and if there is one person, how do they control him if he takes off.
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Sounds like a phase my mother went through less than a year ago. 15 calls to me and my other sister a day each. She hounded the facility to let her go see my father (who passed 3 1/2 years ago) The facility sent in a Psychiatrist who medicated her with Rispidal (may be spelled wrong). Low dose. Then a slight increase. That one didn't seem to do the trick so they moved her to a different drug but still a low dose. She has since stopped the constant calls to each of us. The phase of dementia she is now moved into, she believes my father is still alive and living upstairs in the facility in hospice. She wakes up and wonders where she is and when she will go home.

I will tell you that two facilities told me before we got her and my father into independent living (dad was great mentally) was that there will be a day when no facility will take my mother. I would be sure that if you take dad out that you are sure you are ready to have no one take him in the future.

All I can say is that it is a terrible disease of the mind.
Good luck to you.
Marie
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Wild31 May 2020
Thank you for your advice and the time you took to reply.
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i am curious - what would happen if he stayed home with caregivers?
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Wild31 May 2020
We can’t afford 24 hour care. We were thinking about some help during the day to help with meds and meals. How would we ensure how vigilant they would be with virus? He would be more exposed because my sister can’t say no to him.
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It is not an eviction. It is a matter of safety of all residents and staff. Read the contract. Assisted living/memory care is not a rental/ lease agreement. The facility needs the flexibility in case the placement does not work out.

The facility my mom went to after being kicked out was entirely residents that had been kicked out of other facilities.
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Kimberly88 May 2020
Medical needs do not allow eviction, must use social worker to find alternate placement, if documentation supports cannot be left alone, creating legal obligation for facilities. Facilities try to push family to get patient out, if families act on this, then facilities don't always help families with any transition.
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Hi there not only check for urine infection but if they have not gone to toilet for 2s for some own reason they get scared and I’m just starting to understand that even if given laxatives and so forth which my mother in-law spits out what actually happens is they won’t say anything for toilet then u see start leaning side ways to point they can not hold them self up my mother in-law was storing 2s back up and created pocket which I thought was never possible I have seen this in small dog unfortunately if u can’t get help u have assist getting out size softball
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