How to handle no support services?

Heartbreaking and tough - but you now have NO choice. You have to keep searching and find a place to put him - even if it is far away. The impact is destroying you and you have a right to live and keep your marriage. He is mentally gone so it is time he has to leave your premises. As to the doctor, I once had what I realized later was life threatening if i did not get medical help at once. Same crap - make appointment for the future, overbooked, etc., I went to the doctor and made a terrible scene when they would not help me. I threatened out loudly to sue them all and the doctor came out from the room with his patient in there. He took one look and told me I was going to the intensive care in the hospital at once or I was in danger of dying. An hour later I was in the hospital and somehow survived. GET TOUGH, CREATE SCENE, THREATEN, ETC.
GOOD LUCK.

i have the same problem and the last doctor i sent my mom to gave her the wrong meds. and almost killed her. and i live on the oregon coast and have called every place and put out adds i cant find help anywhere.so if you figure it out let me know. theres little help on the central oregon coast. they even have dementia care down the road and there to backed up to give me and my mom help. i am at my wits end. sorry guys and i understand the anger that comes with this dementia and the saddness. shes a diffrent person sometimes. i wish you luck and hope we can both find help some where.

Even although several people suggested that help "might" be available via various church groups and community volunteers etc, that is NOT a solution. At this point. I would seek institutional care. They have staff 24/7, even if short on staff, there is ALWAYS "someone" there.. This is not a home care situation anymore! You need to let the professional caregivers take over before you are totally worn out! No point in sacrificing your physical and mental health. That will do no one any good!

You need to care for yourself!

Even although several people suggested that help "might" be available via various church groups and community volunteers etc, that is NOT a solution. At this point. I would seek institutional care. They have staff 24/7, even if short on staff, there is ALWAYS "someone" there.. This is not a homecare situation anymore! You need to let the professional caregivers take over before you are totally worn out! No point in sacrificing your physical and mental health. That will do no one any good!

Even although several people suggested that help "might" be available via various church groups and community volunteers etc, that is NOT a solution. At this point. I would seek institutional care. They have staff 24/7, even if short on staff, there is ALWAYS "someone" there.. This is not a homecare situation anymore! You need to let the professional caregivers take over before you are totally worn out! No point in sacrificing your physical and mental health. That will do no one any good!

TooFarGone,

No one knows what is involved in caring for someone with dementia until they actually do it.  Some of the things that happen and situations that come up you probably couldn't have imagined in your wildest dreams because your history with your dad is when he was normal.  This disease is a wild card.  Sounds like your father needs to be placed in a LTC facility where he can get the care he needs which is 24/7.  They have three shifts of trained folks to take care of him.  How are you going to be there for him and make good decisions for him if you stress yourself into a heart attack?  Placing him doesn't mean your aren't helping him, it doesn't mean you are giving up, it means you are making rational decisions that are in his best interest and yours.

keep an open line of communication open with family. Having phone conversations helps especially if someone else in your immediate or distant family is dealing with elder care as well. Have you thought about tele-med physician appointments? PCP out of town? I also live in a remote area with very little in the way of resources. We were fortunate to get a personal care provider out here for 2 hours a day. That is the only help I have. I have everything of my mother's on autopay and auto ship so I don't have to leave her for any amount of time by herself. I do have to admit, that I can leave her for about an hour each day for my personal time. This personal time of mine has been established with her before her cerebral infarctions so this has stayed with her, thankfully. I'm content just being able to go into another room for an hour by myself too.

Do you have a family doctor? Contact them and ask for a referral and suggestions for extra assistance. Mom's GP has a staff social worker for that kind of assistance.

Do you have medical insurance? Check to see if they have a resource for therapists, many also have a help line to call for help and advice. Most offer mental health services via a phone call.

Check to see if any local religious or service organizations have resources that can help. Catholic Family Services was a huge help to me and we are not catholic. Did your dad belong to any group that you can reach out to? Masons, Lion's Club, Rotary, etc.

Was your dad in a military? The VA may be able to help.

Its very hard to ask for help and admit that you can’t do it all yourself. My parents were embarrassed for anyone in their small town to know "their business" and let outsiders know they couldn’t cope by themselves.

Toofargone: Imho, your user name may mean to imply just that. Your father is in need of greater services than you and your husband are physically able to provide. There is a good indication that your father will require facility living, especially since YOUR health could be in danger with your expression that you "feel like (you're) having a heart attack.

Have you tried calling 2-1-1?
https://www.211.org/

have you looked under “County Area on Aging”. Respite services should be available through them, although it sounds like you need much more than respite service. This is a difficult road to travel. Wishing you some relief soon.

Along with dementia he might have a urinate tract infection that’s making him unmanageable as well.
Call 911 emergency so they get him into a facility, and the hospital will call his primary care doctor for further instructions.
You can’t do this any more.
He needs more care than you’re physically able to provide and that’s ok.
You did all you could for this long.
Hugs, then dial for help-
Do not feel guilty for a nanosecond.

What you do if help is not possible and you have reached your limit and your own health and sanity is at risk is call 911 and have him transported to the hospital. Or place him in a nursing home before it has to get to that point..

Dear Toofargone,
The sad reality is that seniors that live a long time with dementia will get to the point of needing to live in a residential facility. The reason is usually that their loved ones can not manage their care 24/7/365; you have to sleep sometime. It seems you have reached this point. Here are a few suggestions:

1 - Time to move to a memory care unit. Research the nearest memory care facilities. Ask to try a meal. Visit the day room(s). Look at the activity calendar. See if you can talk to one of the CNAs and one of the nurses. If they are too busy to talk, they might be too busy to listen to your loved one. How does the security system keep their clients from wandering. Is there opportunities to get outside for fresh air? What is the cost? Do they take Medicare and Medicaid?

2 - Get your loved one to see his doctor. The world becomes an increasingly confusing and scary place for people with Alzheimer's dementia. The confusion leads to frustration; the frustration leads to anxiety; the anxiety leads to verbal or physical "acting out." The best option until you can get to the doctor is to keep to a routine and keep the home from changing. The doctor should be able to prescribe anti-anxiety medications to calm your loved one's anxiety and agitation. The doctor can also prescribe sleeping medication if your loved one has difficulty staying asleep at night.

3 - Try OTC medications until you can get to the doctor. Benadryl is used a lot in hospitals as a sleeping medication for seniors and younger people. It is not addictive and has practically no side effects. Some people swear by CBD oil for calming agitation and anxiety. Other OTC herbs and teas can help calm people a bit - chamomile, lavender, St. John's Wort or valerian (same plant)... Please check with a pharmacist or online Medication site to make sure there will not be interactions with your loved one's usual medications and any OTC preparations your are considering.

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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

Look online for volunteers that come to your home.maybe your church.care.com