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Dad was not sleeping and being feisty refusing to get in bed at night, kept rolling through the house insisting we carry him home. Then when we say we could not at the time (for reasons mentioned in another post), he would try to get out the door.


This was upsetting to me but my hubby would get factual with why he could not go home and why he had to leave our home if he didn't stop doing what he was doing. They both would end up in a yelling match only to make up later.


Due to my husband insisting we get him into a nursing home right away and bypass trying to get him into his home, I wanted to make sure he would be well health-wise wherever he ended up.


So during one of those episodes last week and at the insistent prompting of hubby to send him to hospital and then a nursing home. I called the ambulance hoping they would give him something to take the edge off. All they did was evaluate him for confusion, ordered a ct scan, and discharged him about five hours later.


Then I found what I thought was another great option for evaluation in regards to medication for agitation and sleep. We took him to that hospital and then it went horribly wrong. They were taking so long in getting him admitted that I started to have a change of heart (not a good feeling). They told me because of the issues I stated he could not be released and was being sent to a behavioural unit.


It has only been a week but now when I call to check on him attitudes are no longer positive and staff are huffy and dad still has no meds.


I'm worried and hope being in this behavior unit for something simple does not cause nursing homes (if that ends up being the end game) to not want to take him on.

sometimes u dont need meds. sometimes it does more harm than good. go to netflix check out those pics about meds, health real documentaries. Also, go to you tube check out Dr. Neil Bernard on health and Dr. Klaper google him and hes also on plant base health site. meds does more damage than good.
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answry Sep 16, 2021
I understand what you are saying. In fact, when dad first got here we were looking at having to administer fifteen meds. I was not okay with that idea for said reasons you mentioned. Then hospice and I agreed on around five.

With that being said, I would gladly trade the fifteen meds in for just one, just one, that would ease "some" of the anxiety that leads him to behavior that starts working the nerves of others. Not knock out but calm.
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u should ask ur husband if it were his parents would he do that. that's insane. there was no need for that. its better if u were able to go to his own home. have a caregiver come to where he was and felt safe. ppl don't understand u will be in the same situation one day. how would u feel. to me its better if u r at ur own. if u notice everyone, i mean everyone no matter what wants to be in there own home, there state somewhere with familiarity. u just wont understand until ur in those shoes. u go get ur pops and let him stay home get a caregiver, get a good doctor to evaluate him. Now they will give him meds. when u don't have control they will take control. its all about communication, hugs and respect and putting on ur listening ears.
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Just wanted to add that dad is back in the home with us for now. They did not have it set for discharge to home although they sent the paperwork to a couple of nursing homes. However, I'm still working on all of it and working on all things at one time.
 
They did add the three meds donepezil (familiar with and hated), memantine, and Seroquel. However, the Seroquel prescription got screwed up (insurance issue). I've called the behavior unit several times for help with the script but I think it's a case of out of sight and out of mind now.
 
Hoping a follow-up appointment with his primary doctor will help us continue this emotional journey.

Thanks for all the input! Highly appreciated!
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Llamalover47 Sep 16, 2021
answry: Thank you for your update.
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I have a husband with early onset alzheimers last night he pooped in his pants (no underwear ) so it rolled down his legs which he proceeded to roll all over his bedroom , right now he won't get off the floor and is covered head to toe in feces. I will put him in a home ASAP It took me 2 hours of checking to get him up another hour to clean and dress him , I still have not entered the bedroom because each time I gag, I know eventually I have to go in and clean. I will be putting him in a home has soon has i find one. I can't take it anymore. I am sorry for what you are going through put wait like I did on making the move.
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answry Sep 15, 2021
So sorry JSunny. That I would not be able to handle long term but have had that experience before with mom before she passed and it was no fun. Hope it gets better for you as well!
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Your husband is going to be sorry about his decision. You should either read my posts here or do a search on the internet about " abuse of the elderly in nursing homes " and may be that will open your eyes. If you think calling an ambulance to send him to a hospital or a nursing home is the solution you are wrong. They are going to hurt him there. Get help at the house. Get someone to come and help you so you can take a break. Dont send him to those places. All elderly patients hate them because they get abused by them.
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mstrbill Sep 14, 2021
My experience was completely the opposite. The nursing home took wonderful care of my father. he was happy, safe, was able to socialize with others and well cared for.
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Answry, your story is somewhat difficult because you keep saying "hospice" when I think you mean "hospital ". Am I correct? Those are two very different services. My take is you do need to get legal control (POA or guardianship, ask an attorney). And probably place him in assisted living or memory care. Overall, the main difference between nursing home care and assisted living is that nursing homes provide medical and personal care in a clinical setting, while assisted living primarily provides personal care in a home-like, social setting.
Neither of them are paid for my Medicare. Medicare will pay for a certain number of days in nursing home IF the person goes straight there from a hospital ADMISSION. Be careful, frequently they just hold for observation rather than admit then they do not qualify for coverage in a nursing home. Once a person has depleted all their assets Medicaid may cover the cost of a facility after all the monthly income is applied ( social security, any pension or retirement income). The restrictions on how much a person can earn are different in each state. If ye is a Veteran there my be some financial help. None of this is taught in school and we must educate ourselves on navigating this very complicated area. His child(ren) living in his house (is it paid for? Are they paying rent? Etc) will need to move out so it can be sold to pay for his care. So many moving pieces, good luck, we are all in this experience together.
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answry Sep 15, 2021
I brought on regular home health as soon as he was discharged from rehab at the hospital to continue monitoring for a while. Then we transitioned over to hospice. Hospice then suggested a behavior unit to figure out a med for sleep and anxiety because the hospice doctor was not comfortable with that aspect of his care (trying different meds). 

Part of the process of getting him to the behavior unit was taking him to the hospital and getting him medically cleared (blood work, urine & covid test, etc). The first hospital (same branch in our town) after getting him medically cleared refused to help just threaten they would sit him out in the waiting room and report us for not picking him up.

So then we spoke to the behavior unit again who told us to bring him to the next town (exact location of the unit) since the sister hospital wouldn't cooperate. We did and it still ended up being a nightmare but thankfully it is over.

His home is paid for. The sibling living in the home doesn't pay rent.
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answry: Imho, the first hospital that you sent your father to did exactly what they should have done, even though "you were hoping they would give him something to take the edge off;" they performed the CT scan and I assume that they performed the protocol of blood work and blood pressure reading as standard practice. He should see his specialist and not an ED for medication rx, typically, UNLESS he verbalized that he required a script for anxiety - even then, the ED may typically send him to his specialist as a Hospitalist is under ED doctrine.
The acrimony between your father and your DH should not have been brought up for discourse at all since the hospital(s) may have speculated on abuse, even though there was none.
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Seems like he is in incapable of caring for himself at home. Yes?

Seems like his confusion, agitation, demanding to "go home," and acting out meets criteria for an involuntary admission to a psychiatric unit for evaluation and treatment. Yes?

The arguing between your father and husband is concerning that your father may be a case of potential elder abuse. Staff have a duty to report all suspicions.

So, you need to approach this admission from the perspective of asking (not demanding) the doctor and staff what is the problem and how can you help.

Getting problem behavior evaluated and treated actually increases your father's likelihood of being able to remain in a residential facility.
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Ricky6
He is still in the behavioral unit (just made a week Wed). They’re finally saying he is doing well enough they’ll probably discharge to home tomorrow. We have to go and pick him up. No aggressive or combative behavior. Just sleep issues which were my main concern. Dad's agitation was behind going home. After speaking with the nurse they are saying they have been trying him on memantine, seroquel, and added back aircept (will know for certain tomorrow), which now I’ll be researching the first two.

I’m sorry my story seems a bit mixed up and confusing. Trust me it has gotten crazier. Once hospice was discharged so that he could try the behavior unit at the hospital it got out of control. Between the hospital and the behavior unit, they had me questioning my decision. First, the website read as if the unit was going to be right there at the hospital after passing all the health screenings. Then we found out he was been sent to a behavior unit across town. So the unit is supposedly still part of their offering just not in the same building. But because I didn’t get to meet anyone or see the building where he would be, I just could not control my crying coming down the road. Good thing my husband was driving. Then the bhv unit staff started with attitudes a few days later as if I was asking too many questions or should not be calling once daily for an update or just to ask how he was doing.

At1234
It’s a sister that never/ever left home. She is one of the ones that depended on our parents for everything in life. Yet said so ugly, he ain’t coming back here (his home) & I don’t want him here (his home) but gladly spent a portion of one of his checks that came to the previous account. At any rate, it would have gone over better with me if she had said if you bring him back here, don’t expect me to be the caregiver. Instead, she was very hostile and ugly. I’m not trying to make anyone do anything just trying to do what’s best for dad even to give him the opportunity to see how he does in his own home. This same sister use to say she had legal authority but never produced documentation for either parent – just mouthed off about it all the time with me. I am pursuing guardianship to hopefully have legal authority.

Moxies
The anxiety came behind wanting to go home. It got to the point where he would refuse to go to bed at night. He needed something to take the edge off, not snowed, or it was going to cause additional problems with his health. I believe that with all my heart. He would set up stewing with his feet patting the floor in a quick motion, rubbing his head and rubbing his head, and pacing the floor in his wheelchair trying to exit the home either out the front or back door. Call each of us one by one saying I told you to take me home.

Learn2Cope
I don’t wish for the nursing home at all but because of dad been caught in the middle (hubby saying he can’t be here long term and two children saying he can’t come back to his home but they will be glad to use his checks), it probably will happen whether he or I want it. He was not placed in a behavioral unit to try and beat the system (not sure if that’s what you are saying because hospice could have helped. I wanted to make sure there would be sleep and not so much anxiety still being experienced once he entered a nursing home again.

Disgustedtoo
Yes, that was another of my concerns after I mulled over things. AL and MC may be out because I don't know how soon I’ll get everything squared away if I obtain the guardianship. The sibling is not a minor. Thanks for understanding about hubby and I. We have always helped care full-time with his parents and with my parents, in the thick, but this is a learning experience. I don't know but something changed in dad and I don't know if it's dementia or that he snapped after losing mom last year. He also had a couple of nasty falls that where he hit his head.
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disgustedtoo Sep 13, 2021
Good to hear there's been a little progress.

I would explain the house/sibling/check issues with the atty, to see if they can expedite getting legal control for you. Given his "condition", moving back home, esp with negative "children" involved likely won't work, even with care-givers. An assessment after he is stabilized would be good (the court may order this anyway) and then go from there.

Juggling care-givers in a home that isn't yours is likely going to be a LOT of work. If he can qualify for AL or MC, it might be better for him AND you. If he qualifies for NH, the sale of his home can keep him self-paying for a while, and you can pursue applying for Medicaid, if his income is low enough.

Fingers crossed for you! It IS a learning experience for many of us, you aren't alone. Hope some of our advice and/or suggestions are useful.
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"I'm worried and hope being in this behavior unit for something simple does not cause nursing homes (if that ends up being the end game) to not want to take him on."

If/when they determine what medication he might need, NH placement shouldn't be an issue. If you were to choose AL or MC, that might be a problem, unless he was "under control."

One thing to note is certainly no one should be trying to be "factual" with him. That doesn't work with dementia. Hubby helping isn't doing the right kind of help.

Since you mention court, sounds like you are trying for guardianship. If you don't have any POAs in place, it could be why staff seems to be "huffy" with you, as you wouldn't be considered the care person, per se. Keep trying with the hospital he is in to find someone who can guide you. They may not be able to share any medical information unless/until you have some legal standing. Sometimes a good EC atty can get the court issues expedited. Let them do their thing and you focus on getting the court issues worked out.

Your hubby isn't alone in thinking they can be "factual" with someone who has dementia. My YB is 10 years younger and would try to go to great lengths to "explain" things to mom when she said something or asked a question. It's best to keep it simple, and certainly not argue with them. It's like trying to argue with a 2 year old! No one wins and everyone gets upset!!

Is this sibling living in dad's home a minor? If not, they will need to be prepared to move if/when you obtain guardianship and approval to sell the home to pay for his care.
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I have been a caregiver for about 8 years. You will probably find just the opposite. Nursing homes will want him to be evaluated and treated mentally. What you are going through is quite common. You are doing the right thing for your Dad and yourself.
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You need to get him out asap.
They probably are giving him all kinds ofraters.

I hope someone checked him for a simple UTI which totally changes a person
Prayers.
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It sounds like he is still in the behavioral unit. Is he still combative? You should go see him and find out what’s going on. These situations can take a life of their own without your intervention. Remember the hospital staff are workers, they are not people who love your husband (or is it your dad.) Do you have POA?

I would not worry about the nursing home now. It should not be a problem. Where is your husband’s or dad’s PCP? Do you or can you get the help of a Social Worker at the hospital? Things seem to be a little mixed up in your story.
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Who has legal authority here? Why is someone living in his home?
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Behavioral units vary. For the most part, they can handle an agitated patient much more easily than other facilities. Medication can be useful or dangerous. The fact that they are not using it may indicate that they are taking better care of him not worse. Calming down an agitated person with medication can be helpful; too often it is used to what we called "snow" a person. Makes them quiet and easy to manage, but can also have all sorts of damaging side effects. It is usually much better to have experienced individuals manage it. Is it possible for you to meet with his care team on the unit? Ask nicely and explain you don't know much about this kind of care and certainly want to learn more. It is a good sign that you are worried and concerned. Often, these units have a social worker and that person is a good first source of information.
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Although the overall situation was different, I had a family member who was deliberately sent to a behavioural unit for a few days so that medicare would pay when he was sent to a nursing home. (There was justification for the behavioural unit.) Medicare, of course, does not pay for a permanent stay. I just mention this as an example that the stay in the behavioural unit in this case did not keep the patient from getting placed in a nursing home.
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Don't think you have "messed up", just maybe need to begin with his primary care Doc. From what you posted, he does need to be in either Assisted Living or Nursing home. The "amount" of personal care our loved ones need can be much more than time consuming - emotionally we must also remember that we must take care of ourselves too, That can mean putting that loved on into "professional" hands for their care and living environment. This allows us to take a breath and continue to handle the things of theirs and ours that make their lives better ---- AND YES it will be better. Blessings and love on this journey.
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Live-in caregivers cost MORE than nursing homes. A sitter is about $20 an hour. They just sit and watch. Hands-on care is like $25-$30 an hour. They do the baths and help with activities of daily living. Even so they are not allowed to give meds. Home health visiting nurse is even more money.
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You are absolutely right that the cost of a live-in caregiver from an agency cost as much as a nursing home and assisted living in our area (made those call). So the only other option besides a nursing home is still adult daycare with a Medicaid waiver worker for another 7 hours a day. Then he would be on his own because the sibling that still lives in his home says she doesn’t want him back in his home.

I’ve not thrown nursing homes out with the bathwater. I’m just trying to take my time and get him in a good one even if it means travel time but most love ones including my hubby are in a hurry and just want me to get it done. Kind of like the pressure I felt when getting him into that behavioral unit. My dad and mom were big pieces of my heart and I want to do right by him whether at home or in a nursing home.

I hope I’ve not set my expectations too high for dad. Most days we don’t argue and do well together but my hubby just works my nerves. As my daughter says, how can dad tell someone else to stop yelling when he’s been a yeller himself for years and can’t be reasoned with and he does not suppose to have that problem. But I have to give hubby some credit for trying to help with dad even now. He has always been there for dad when his six sons have not but he is not doing well with where dad is now.

So two facilities have his information but I don’t know how soon they would get him approved. One is in our area (rating is down now - don’t really want him there) and the next one is an hour away (decent rating). Plus he will be around all his specialist (heart, prostate, lung, and possibly a neurologist although not geriatric). No travel time will be involved like it would be if placed near me.

So now you have family upset about that idea but I feel it is about him and not about us. Why not have him where he can have access to what he needs and possibly better care even if we have to travel a bit? It would have been an honor to care for him a while longer but it’s not just me in my home.

Another thing is I’ve been trying to buy time in my home to see what the courts decide but no hearing date so far. If he does not get to go back home, I want to put his home up for sale to make sure he gets the proper care and things he needs. Once in a nursing home, his check will be gone and I’ll still have burial insurance to cover. I know how I like to see him dressed and appear cared for as he deserves. He may have not been the best dad but he took care of us.

But you can’t please everyone. Thanks for listening and holding me up, I feel so sad right now regarding dad and my body is going crazy headed for this menopause thing. Just got back from the hospital a few days ago getting a blood transfusion and I hate what they're asking me to do to not require another transfusion. I hope medicine and the procedure have advanced. Sigh!

Appreciate all of you!!!
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I really don't see how he will ever be able to go back to his home. He would need 24/7 care and the cost would be as much as placing him in an AL.

You and your husband are expecting too much from Dad. With Dementia the ability to reason is gone. His short-term memory makes it impossible to remember what you have said to him from day, minute to minute. And this WILL get worse. Processing what you say has slowed down. Arguing with him is useless.

Dementia is hard to live with because it has no rhyme or reason. What they do one day, they can't do the next. From what I read your husband has a hard time dealing with it. I would consider getting him in an AL ASAP. The sooner he is placed, the sooner he excepts it as his home.
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Harpcat Sep 12, 2021
Sounds like he needs memory care
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Yes, I’m not sure I’ll get the chance to see how he does in his home. Not only because of the guardianship taking a while to get a hearing date but also because I can’t get anyone to help find him a med to take the edge off during the day and for better sleep at night. Hospice was too afraid to keep changing meds to help us find a balance (they were okay with being sedated and we (husband and I were not) if it meant he could not help us help him with his care. So hospice started referring us to an inpatient facility they contracted with but the facility was not returning calls o. So then I started looking at this hospital that offered in-patient.
 
But here is more on why I mean it went wrong. So they got him medically clear around 4 hours and then the entire process stalled out in the emergency room. After 5 hours I asked my hubby to come get information because it was to be just one paper to sign. Finally, the lady brings me the paper to sign only for me to later find out that he would not be in the hospital where we were but one across town. Before signing the paper is when I started changing my mind but by then they were telling me I could not remove him from the emergency room because of the issues I had mentioned requiring evaluation.
 
Now he is in that facility but yet they’ve not made any attempt to add on a medication. Yesterday when they finally let me speak to him, I could still hear the confusion that caused the agitation but yet they have not tried one medication. Oh, he is doing fine but I don’t know when the physiatrist is planning to discharge.
 
I was hoping since he was under my care this time that I could get him on medication to help with his anxiety which I was also hearing and seeing during visits with the previous nursing home.
 
I also feel bad that I can’t care for him in a home within walking distance because of social security rule with SSI income. For the most part, he was doing okay in a small setting but that not sleeping was getting us.
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pipruby Sep 12, 2021
It takes time to observe an elderly person's behavior and a good evaluation is critical to finding appropriate medications and dosages. Most medications for mental health take at least two weeks to start to work. During that time he will be observed by skilled staff who are specifically trained in this area. The social worker can then evaluate for the best level of care, which sounds like memory care at this point. They can help place him directly from the hospital as you would have a terrible time finding placement from your home.

He will complain about it wherever he is placed. It's just part of whatever brain disorder he has. You have done everything you can do, please do not feel guilty. Remember the complaints are part of the illness.

If you see him improve it means he is in the proper level of care. Do not think that he is sufficiently "cured " enough to bring him home or to a lesser level of care.

Let the staff do their 24/7 jobs and you and your husband can take so time for yourselves knowing he is safe.
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Has it ever occurred to you that because of the love and concern you feel for your dad, you might be overthinking and micro thinking every thought you have concerning his care?

That may be the case.

If, as it sounds, he is unlikely to be able to be SAFE and contented in his home, it may be time to take that choice out of consideration.

MY OWN dear LO was a significant “escape risk” in her early days in AL, and I finally had an assessment done by an amazing g geriatric psychiatric assistant who worked with the residence. Her meds were adjusted, and there was an almost immediate improvement.

You are a bright, intuitive, very caring daughter. Time to give your good thoughts a longer trial, and above all, time to relax and let your ideas enough time to play out before you change your mind again and switch to something else.

The pain when my dear LO was trying desperately to escape her lovely new surroundings was devastating to us, but from it, I learned that no solutions when dealing with elderly LOs are likely to be perfect, or even pretty good.

Seek solace in being able to keep Dad safe and as comfortable as possible. It will be unfair to you to try to do any more.
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cxmoody Sep 9, 2021
“The pain when my dear LO was trying desperately to escape her lovely new surroundings was devastating to us, but from it, I learned that no solutions when dealing with elderly LOs are likely to be perfect, or even pretty good.”

Oh, my goodness. Yes. This.
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It counts as inpatient care. Check with your insurance. Ask them for a referral to a geriatrics for further eval
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Hello,
I'm trying to understand how the hospital was able to place him in a particular facility against your will? I've heard medical staff say a person cannot return to their own home alone but he was living with you. I would think you can remove him from this location and place him in a facility of your choosing. It sounds like you need to have someone advocate for you. Can you speak with your father's doctor or a social worker? I think what I'm hearing is that it was believed placement would be quicker and easier if he were placed directly from a hospital instead researching facilities and then placing him.

Caregiving can place a strain on marriages. Sorry for what you've been going through. We had to cancel a vacation this year because we couldn't take my father and could find anyone to care for him.
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ruthieruth Sep 9, 2021
He has to provide consent unless he is conserved by a court. POA cannot do that in most states
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