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I have been caring for my father with dementia for 6 years. He lives with my husband and I in an area with very limited to non-existent services for dementia. I've called everyone and there is nothing and no one to even give us a break for 1 hour. We moved 100 miles to be closer to him, so moving again isn't an option. What do you do when all the advice about getting help isn't possible? How do you do this 24 hours a day, 7 days a week and survive? Now he's getting delusional and thinks my husband pushed him, so my husband, who has been wonderful, can no longer help me out. I called his PCP for an appointment, but it will be 5 weeks until I can get him seen for 15 minutes. I'm terrified of him and have to be with him every waking moment. I feel like I'm having a heart attack. Help.

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The next time he has you feeling “terrified” call 911 and have him taken to the hospital. His care needs are more than you can provide, not your fault, it just is reality. Tell the hospital staff that no one is safe and you can’t do this even one more minute. What your doing isn’t sustainable without awful consequences to your health and marriage.
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It sounds like you have now reached the point where you must place your father in the nearest, and appropriate facility, as you know things with him will only continue to get worse. You do not want to be in the statistics where the caregiver dies before the one they're caring for do you?
You can call your closest Area Agency on Aging, and they will help you find the right facility for your dad. They should also be able to help you find some in home help as well, until you find a facility that works best for your father.
It's time to not only do what's best for your father and his safety, but also what's best for you and your health. I wish you the best.
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Yes, if he gets aggressive or violent then call the police. Tell them ur afraid for your life and he can't come back. They should place him in a Psychic facility that should try to find meds to calm him down.
And you tell them you can no longer care for him.

He needs to be in LTC. You cannot handle someone with mental problems. Spend down his money and then apply for Medicaid.
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Toofargone Jul 2021
JoAnn, I sincerely hope you are not and will never be a caregiver for anyone. Calling the police is cruel to someone who has dementia.
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If you are terrified, you need help ASAP. This is obviously too much. Is your dad not allowing your hubby near him because he thinks your husband pushed him? 5 weeks to see doc is crazy! Sounds like finding a helper for a few hours is not a good solution. Sounds more like he needs full-time caregiving. Probably in a memory care unit. Start calling around nursing homes for tours after you find out if they have memory care (usually a locked unit for patients safety).

Good luck.
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I'm a little confused..

"We moved 100 miles to be closer to him, so moving again isn't an option".

You moved to share a new place with your Father or into your Father's home?

If you moved into HIS home - if you were to move out... he will need other care - immediately.

I'd suggest to get a telehealth appointment pronto, tell the Doc his care needs are WAY too high for you, becoming aggressive etc & take the necessary steps... Father goes by force with EMS if violent.

What am I missing? Why does it feel like the Father is calling the shots here?

I am so sorry you are terrified of him. Please don't hesitate to call Lifeline or his Doctor immediately.
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Toofargone Jul 2021
So we bought our own beautiful home near my father on the Oregon coast. So what happens here is that the ER, Urgent Care and EMS services will not take a mental health crisis or dementia patient. The only option is the police. But I don't need them, because putting my dad in jail because he has a bad day doesn't seem right, it seems cruel.
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In a previous post you wrote: "The last few months have proven to me that I don't deserve a life, I don't deserve love or compassion, I don't deserve anything. If society were set up that way there would be help."

Do you still feel this way?

What will happen to your father if you get so sick that you can't take care of him any longer? What will happen if you die? (Many caregivers of LOs w/dementia do indeed die before the LO.)

Do you have siblings?
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Your anxiety is at max level. You are terrified. You need to step away from being his caregiver.

There isn’t any good reason for you to remain as your father’s caregiver. Sometimes, we have to accept what we cannot change and choose what is best for everyone involved.

He is delusional. You and your husband mean well, but you are in WAY over your heads.

You say that you can’t move. Yes you can! You can live anywhere that you like, but first, you MUST find a suitable facility for your dad. Don’t make any more excuses. If dad has to relocate in order to receive care, so be it. So, if you are going to continue to be in his life, then I suggest that you pick a place that YOU want to live. There are facilities all over this country.

Stop placing yourself in harms way. If you need help with this, ask your dad’s doctor for a name and telephone number of a social worker. They will help you.

Best wishes to you and your family. Stay safe!
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Whats great here is that everyone has exactly the same answer. But they also didn't read the post at all. Get help is all anyone can say. Post clearly says I tried and found nothing. Then, Get help, even if you have to move across the state, but what makes anyone think help is available there? I feel like most of the post and answers here are a veiled attempt to get everyone to dump their loved ones in a home. What I am going to do is get completely out of looking at any senior care information. It just makes me feel worse. It's like there is one option and one option only- put them in a home where they can be abused for 7000 a month.
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Kimber166 Jul 2021
Toofargone - my dad lived in a rural area with no resources - my stepmom got 2 hours once a week so she could get groceries. My dad became violent - and blackened my eye, and another time broke my arm. We had no choice but to do an ER intervention.

Best decision ever. He was not "dumped". He was put in a Medicaid - paid for nursing home, with 7x24 staff that could provide the care and attention we were not able to give.

My stepmom still helped him - she was his advocate, his visitor, etc - it is just she no longer had to receive blows, handle incontinence, refusal to bathe etc. He received far better care than we were able to provide and he liked the memory care staff.

You are getting burned out. You know you need a change. Good luck - i hope you are open minded about it.
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Toofargone,

I am very sorry that you feel worse. Everyone was sincerely trying to help. I understand your frustration. Your response to Beatty states that you live on the Oregon coast. You don’t list a location in your profile so I did a general search online and this is what I found for you. There are lots of contact numbers and I truly hope there is a location in Oregon near to you. It wouldn’t hurt to try calling and see what they suggest for your location. carefororegon.org

You can also call Council on Aging in Oregon. They will do a needs assessment on your father and make recommendations for his future care.

It is extremely difficult to be a caregiver in a challenging situation. I did it too. I cared for my mom for 15 years in my home. It’s the toughest job ever! So, I understand that you are at your wits end.

Placing a person in a facility isn’t ‘dumping’ them off. Sometimes, it’s the only option. If finances are an issue, there is Medicaid. You can still be in your father’s life as his advocate. If your state allows cameras in his room, you can do that too. I will not deny that abuse doesn’t happen. I believe compassionate care far outweighs abuse. There is a shortage of staff in some homes. It is important to be an advocate for residents in a facility. It is possible to build a positive relationship with the staff. It is important to do research on the facilities that are a consideration.

I recently lost my mom. She was 95. She spent the last month of her life in a wonderful ‘end of life’ hospice house. Mom adjusted and they were so caring. She had the benefit of a professional staff, nurses, aides, social worker and clergy. I will be forever grateful that my mother died with dignity and free from pain. She had Parkinson’s disease and slight dementia.

I am fully aware that each of us has our own individual circumstances. One thing that we do have in common is that we are all struggling with decisions regarding our caregiving responsibilities. Some of our parents have died and then we have cared for our spouses or our own health issues. Many leave the forum after their loved ones have died, others stick around to help new posters. Some of the posters have become like family to each other. This truly is a group of people who care.

I hope you will see that no one intentionally tried to make you feel worse. I hope things work out for you no matter what you decide to do. I wish you peace as you navigate your way through this difficult time in your life. Take care.
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A strange response to Joann from this OP called ‘Too far gone’. “I sincerely hope you are not and will never be a caregiver for anyone. Calling the police is cruel to someone who has dementia.”

OP, why are you ‘terrified of’ your father? If you have good reason to be terrified, then why is calling the police not appropriate? If you used the wrong word – perhaps you meant ‘terrified for’, not ‘of’ - there is no reason to insult people who have answered you in good faith.

Calling the police in these circumstances is not the same as ‘putting my dad in jail’. The police are simply the first responders (who don’t know what level of disturbance they will find). Their involvement is more likely to result in getting the services you find difficult to access. For example, he may be helped by a week to monitor his ‘bad days’ and find medication that will ease them – for you as well as for him. And have you looked for respite care? You sound as though that would certainly be helpful (even if it's a distance away)

You do need to acknowledge that buying “your own beautiful home near my father” in an isolated area, means that services will be limited. That’s why elders who live on isolated farms where I am, often relocate to a nearby town as they get too old to run the farm. Did your father consider moving, or did all of you just assume that you would do everything he needed? Was it the wrong decision?

Please could you complete your profile, and spend a bit more time on the site, before you reply like this someone who answers your plea for ‘Help!’ And please reread before you post – why on earth do you ‘feel like you are having a heart attack’? Heart attack symptoms are quite specific!
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Try and move up his PCP appointment and tell them the situation you are presently in.
Hopefully they will have a social worker to help with some answers.
In a crisis you may have to do an ER intervention.
Sounds like he could benefit from some medication to help with the outbursts and anger.
Wishing you the best of luck.
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Try and find yourself someone local who can come in an just sit with your father, or make efforts to entertain him. Someone maybe who has dealt with someone with dementia before.
Join a group of people who chat rather than a forum like this so you can talk with others in the same position and people who "nurse" people like your father.
The situation with your husband will no doubt pass as the dementia progresses and your father forgets whatever he is currently thinking.
If we cannot get professional help we have to think outside the box at how we can get some assistance and relief with the help of others.
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Maybe someone from church can help? If it's just an hour or so. Any other family members, neighbors?
Prayers you find a solution.
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Put him in respite so you can have a break. There must be a respite facility in the area, It will cost money. Perhaps it is time that he is evaluated for going into a nursing home.
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Maybe you can contact the Alzheimer's Association for possible resources...
https://www.alz.org/help-support

I don't know if this is an option in your area but hopefully you can find some senior care (in your home).....

Care.com
https://www.care.com/senior-care

And as someone else previously mentioned, try the department of aging for your area. Maybe even Medicare could be a resource?

Good luck...I feel your pain! My dad has Alzheimer's - stage 6 (out of 7) and many other health issues that recently popped up.
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Look online for volunteers that come to your home.maybe your church.care.com
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Mare sure he doesn't have a UTI Urinary Tract Infection as they make you totally different, makes you hallucinate, aggressive and says things that aren't true but they completely think are true.

Check with his Insurance and see if he can be put on Home Health where a Nurse will come to the home to visit and an Aide will come to help with bathing if needed.
As far as Free Help to watch him, if he's been in the Military, then you can call the VA and they can provide service of up 30 or so hours a week of Caregiver Help.
Other than that, you would have to hire and pay for yourself fir a Caregiver to come out fir a few hours once a week costing anywhere from $12 to $20 an hour.

You might also check with your Church or call an Aging Place and see if they can help.

Other than that, if it gets too bad and he has to be checked in to the Hospital, when the Hospital says he can go home. At that time tell them that you can no longer Safely take care of him and you won't be checking him out or bringing him home that the Hospital needs to find a place for him to go.

Prayers
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Someone film his behavior or record his conversation when he is delusional or "terrifying". If you call 911, the police might come, or an ambulance with EMTs might come. They will take him to an ER to be evaluated. Write down specific examples of behavior that has concerned you-delusions, threats, etc. This is not to put him in jail, 911 is a funnel for all services. If you are having symptoms that feel like a heart attack, it may be a heart attack or anxiety. You can't decide, again write down exactly what happens to you, and you go to the ER and let them determine. Be a polite but informative squeaky wheel. It is a big problem with limited resources, you aren't like to get access to them with polite phone calls.
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As the previous posted said, get help. Someone film his behavior or record his conversation when he is delusional or "terrifying". You cannot drive him to the ER alone if he is very frightened and confused, it is dangerous. If you call 911, the police might come, or an ambulance with EMTs might come. They will take him to an ER to be evaluated. Write down specific examples of behavior that has concerned you-delusions, threats, etc. This is not to put him in jail, 911 is a funnel for all services. If you are having symptoms that feel like a heart attack, it may be a heart attack or anxiety. You can't decide, again write down exactly what happens to you, and you go to the ER and let them determine. Be a polite but informative squeaky wheel. It is a big problem with limited resources, you aren't like to get access to them with polite phone calls.
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As the previous posted said, get help. Someone film his behavior or record his conversation when he is delusional or "terrifying". You cannot drive him to the ER alone if he is very frightened and confused, it is dangerous. If you call 911, the police might come, or an ambulance with EMTs might come. They will take him to an ER to be evaluated. Write down specific examples of behavior that has concerned you-delusions, threats, etc. This is not to put him in jail, 911 is a funnel for all services. If you are having symptoms that feel like a heart attack, it may be a heart attack or anxiety. You can't decide, again write down exactly what happens to you, and you go to the ER and let them determine. Be a polite but informative squeaky wheel. It is a big problem with limited resources, you aren't like to get access to them with polite phone calls.
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Fellca Jul 2021
You are absolutely right Moxies. Having worked as a RN in Psychiatry I know you can call the police (911) when a situation like this arises and they are NOT going to take anyone to jail. They will "triage" this person to the appropriate venue for treatment. My hospital had "mobile crisis staff" which would be called in by the police to assist in evaluating this persons needs.
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Please record or film his delusional behavior. This will be helpful for an evaluation. And get your own heart attack symptoms checked. They may be anxiety, but you cannot determine that. Go to the ER or an urgent care yourself. This is at minimum information from your body that enough is enough.
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Caretaking is the most gut wrenching, exhaustive job in the world, and it takes it's toll on all of us. Just reading on this forum has been a game changer for me.

In the short term, have your husband "apologize" and see if Dad will accept, you need his help! I would have gone mental without my dear husband's help and support. Call your local churches. Check ads or post one in your supermarket. Call your local hospital and college and nursing school and ask if you can post an ad in their cafeteria for part-time aide service.

I can hear the panic in your post. You really cannot control or fix the workings of his mind. I understand you love your Dad and want to be able to care for him, but the average person is not equipped to do that when it comes to mental issues.. Make an appointment where he can be evaluated by a Psychiatrist - perhaps all he needs is something to decrease his anxiety and agitation. What calms your Dad? Elders love music from their era, it calms them and puts them in a good mood. Puzzles, word puzzles, TV shows from their past are all good mood changers.
There is no one solution but taking steps to prepare for the future will help tremendously in the long term. Decline can come rapidly so be prepared for every situation. If he is going down the path of no return mentally, then you will need to have him placed eventually - so do your homework NOW and visit local places just so you are prepared and can feel good about the place because YOU chose it. Contact an elder care attorney and get his finances, will, POA and Health Care Proxy done NOW. A good elder care attorney can help set your Dad up to qualify for Medicaid services, which includes Long Term Care.
Stay on this site, it has been a godsend for me. It helps to see you are not alone, some people have worse issues, different issues, but we are all struggling. It's kind of a mental therapy for all of us - and yet you may just find the single perfect answer here when you least expect it. We care.
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Would you be willing or is it physically possible to have another person in your home? Contact churches in your area to see if they know of anyone who might be looking for a live-in caretaking situation. (I say churches only b/c they might at least know the applicants which would be better than just putting an ad in the paper.) The hired person would need to have some competence in managing a dementia patient.
No one person should be expected to take on all the care 24/7, but having another person to share the duties might help you a lot. Work out what responsibilities and schedule a hired person would have and pay accordingly. You should offer adequate compensation in addition to room and board.
Our family had live-in help for my paraplegic mother for many years.
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Er. Well. With respect, and much as I hate to contradict, you moved 100 miles into an area that had no support services.

You now find that there are no support services.

Run it by me again: why can you not move yourselves and your father 100 miles out of this area to one that does have support services? I can understand if you're feeling too overwhelmed to undertake the research and planning yourself, but I'd have thought it would be the ideal project for your very responsible- and caring-sounding husband.
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TouchMatters Jul 2021
* A bit harsh under the circumstances and water under the bridge. Mostly.
Nothing like telling someone what they should have done ... after its done.

* I also believe many people do not think 'beyond' the situation they are in - and this woman maybe had NO IDEA what she was getting into, moving.

* Sounds like financially, she cannot move again - ? Many family members have NO IDEA of what is happening or will happen in the future.

* I would hope she researches Medical and facilities even if not near by. She will burn herself out and it will affect the quality of her marriage if she doesn't make some changes. Soon.

Gena / Touch Matters
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You may have to post an ad to hire someone locally on your own. You’d have to pay for a background check and then train them what to do yourselves. You definitely need a break. I also got a camera system so I could watch when I was not home what was going on with my dad. Respite care is the most important factor in being able to maintain your sanity through the whole thing. If he’s getting delusional that’s a sign things are progressing. Have you talked to his doctor about all this? You may need to put him in a care home at this point if you can no longer cope. You need to think about your own life too.
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If you don't get help, the stress you're under might very well give you a heart attack. I was under that kind of stress for 2 years when my mom lived with me. I had to move her out to save myself and my family.

What do people in your area do about their sick elderly? Do they keep their loved ones at home until they die? Or are there nursing homes?
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I have seen this situation before. With this disease, it will be hell for those taking care of him and the end result is that it will destroy you and any semblance of normal life you had. When there is no place and no one, then you must seek a placement outside of those close boundaries. He needs more help than you can give to him and it is killing you and he would be cared for. Seek outside further away places- you have no choice.
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My first reaction is that your father needs a geriatric psychiatrist, but one is probably not available in the area where you live. If his PCP is not familiar drugs that could help your dad then the doctor might be reluctant to prescribe any of them. The alternative is to take your father to the ER of a nearby hospital and hopefully there would be a doctor who would prescribe these type drugs. Regardless, where you go he needs medical help and the sooner you get it, it will help you too.
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So sorry for the stress you are feeling. Have you contacted any churches close by? Sometime they offer respite care as part of their ministry. You definitely need to feel safe physically in order to keep functioning.
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First, I would call the doctor back and request a quicker appointment by expressing the urgency of seeing him. If that does not work, change his PCP to a doctor who will see him quicker. I do have to wonder what you expect from your doctor appointment. A medication of some sort to fix the problem? Documentation to move dad to full time facility care? What is your goal?

Even in large cities, it is highly unlikely to get free respite care - of course it depends on dad's income what might be available and if he qualifies. It's very possible your only option will be to pay for someone to come in. Even in the most remote areas, there are home health agencies that can serve you if you qualify or if you can pay.

As for moving to this place to care for him, did this begin as an arrangement that may have of benefit to you? You lived in rental and moving to him made things more affordable? He owned a home, you did not? If he has diagnosis of dementia, it will be difficult at best to have him sign documents to sell out and relocate at this point.

Do you have any siblings to call on for a short respite? Anyone you know that could work for him X number of hours per week to help - cheaper than going through an agency? When he is out of control, have you considered calling an ambulance to get into a hospital for evaluation or another doctor's care? Does he have any income that can be used toward his own care and use you/your husband's income to pay for the household needs that you would have to pay anywhere else that you live? There are people living in the same area as you that could be hired to assist him and you - his money should be tossed in that direction.

If you are looking for unpaid assistance, regardless where you live, it is highly unlikely. If he has become unmanageable and you are seriously afraid of him, it's possible that you just need to speed up the doctor's appointment, get medical necessity for facility care, and get the process started. He may end up in a facility further from home than you would like, however the primary goal is to allow someone to manage his care if you can no longer do so.
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