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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........?

With his health issues it is incredibly unlikely you can manage him at home, he would need 24/7 care. They all want to "go home" no matter how impossible it is; so best not even engage him in that discussion. The home he wishes to return to, where he is healthy and free to do as he pleases no longer exists, so there's no going back to it. Stop answering every time he calls you. It does neither of you any good. Might want to even take the phone away for him, especially if he keeps calling the police.
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Wild31 May 20, 2020
Hank you for taking the time to respond. You have given me good insights. Stay safe.
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I would get him checked for a UTI, if this is new behavior that could be the culprit.

When was his last needs assessment? His dementia could have advanced to the stage that AL is no longer the best care.

I would not take him home.

I would request a new needs assessment by someone besides the facility that wants him gone.

I would tell him that he has to stay right where he is until (fill in with whatever will get his attention).

It is so difficult when they are basically being held prisoner in their rooms right now. I would want to leave if my only space was a small apartment or room and nothing else. So be patient with that, it is understandable.

I would be angry at the facility for wanting to implement more change in his upside down world. With this lockdown they should have expected behavioral problems and been ready and able to cope. It is probably time to look for a better facility that actually has the ability to take care of their residents. This place obviously just wants to be an expensive warehouse.
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Wild31 May 20, 2020
Thank you for taking the time to respond. You have given me good insights. Stay safe.
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Yes, get an order for a test for an UTI.

Do you want to share what medication? Even though we cannot diagnose or prescribe, many caregivers are aware that some meds can cause the opposite behaviors than the desired help needed to calm your Dad down. If that would be helpful to you.

Trust that there is a definite unmet need in your loved one, and it is stressful that he is suffering. And that you are suffering too.

When my neighbor went through this, he even called us all through the night! We could not take his calls, and turned off the phone. Turns out, after calling his doctor's office for help, and the doctor refused to test for an UTI (his staff knew nothing of the elderly symptoms of having a bladder infection, going only by their 'protocol'), this man did have a UTI.
How then did we find out? He was transported to the E.R. and tested. He had a UTI, and the behavior stopped soon after treatment. Be sure that it is not just a dipstick but a complete urinalysis with culture and sensitivity.

An elderly with a UTI can quickly deteriorate into sepsis and die.
The hallmark presenting symptom is behaviors! No fever, no burning on urinating, or the usual symptoms.

I would not be surprised that if someday the medical profession adds this to their list of UTI symptoms in the elderly: The patient is driving everyone else c r a z y!
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Wild31 May 22, 2020
Thank you we will have that done. I appreciate that you were so detailed in your explanation.
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Was he given a professional assessment to see what level of care he needs? You say he's in a retirement home....does he need Memory Care? The place where he is may not be equipped. Can you help get him somewhere that can manage his care? MC is better equipped to manage the care of those who have substantial dementia. His doctor may need to sign for this type of care, if he qualifies.

With this much agitation, he may need to have his medication adjusted. This is done a lot by doctors who regularly treat dementia patients. Or a geriatric psychiatrist. Hopefully, they can find something that helps, but, I'd also keep in mind that sometimes, people who suffer with dementia are not content and they may stay that way until they enter another stage of the illness. I'd consider that he may not be repeatedly calling you due to insistence, but, due to the fact that he is forgetting. He forgets that he's already called you 10 times, so, he does it again.

I'd keep in mind that even if you bring him home, he may continue to insist on going home. He may try to leave his own home and behave in ways that make it just as intolerable there as the retirement home. His understanding is not likely to change and you may be no more able to appease him than the staff where he is. Plus, he'll need 24/7 supervision and that's not easy to do if he is resistant to care in his own home.
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Wild31 May 20, 2020
Thank you so much for taking the time to answer. You have given me a lot to think about. Stay safe.
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Prepare to move him. If he becomes agitated often, he will eventually be kicked out. The facility will not be so friendly if it comes to that.

My mom was kicked out, she was a danger to herself and others. She was moved from MC to a much smaller care home, ten residents instead of 25, more individualized care, better care and it was cheaper.
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Wild31 May 22, 2020
Thanks for the info. This virus is making things so difficult
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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 24, 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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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 24, 2020
Thanks for your input. It has been helpful.
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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 26, 2020
I am very sorry for your struggles with your brother. I hope a good placement works out.
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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 24, 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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Imho, he may require a higher level of care.
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