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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.

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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Reply to NeedHelpWithMom
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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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Reply to Daughterof1930
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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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Reply to MargaretMcKen
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It's time to get your father into a care facility where he can be provided 24/7 care. It's the kindest thing you can do for him at this time. And absolutely necessary for your own health and well-being and your marriage. Kudos to you for what you have done for your dad. Now it's time to get him the care he needs. And the respite you need and so well deserve. God bless you.
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Reply to SweetSioux
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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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Reply to Countrymouse
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TouchMatters Jul 31, 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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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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Reply to funkygrandma59
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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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Reply to Riley2166
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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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Reply to Ricky6
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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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Reply to JoAnn29
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Toofargone Jul 29, 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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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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