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.
GOOD LUCK.
You need to care for yourself!
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.
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.
https://www.211.org/
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.
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.
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.
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 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
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.
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.
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