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.
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.
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.
Good luck.
"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.
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?
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!
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.
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.
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!
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.
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.
Prayers you find a solution.
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.
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
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.
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.
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.
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
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?
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.